Still on that boat…

Strawberry blonde in a dizzy world!

Up and Down

March25

Well, the last couple of weeks I’ve had a couple of good days followed by a couple of bad days. it’s so frustrating! On a good day I have managed a yoga class or a short walk and cooked myself dinner. On a ‘bad’ day I sleep all day or binge watch Netflix  (I definitely get my moneys worth out of that subscription!).

So, this is where the Spoon Theory comes in. it’s a great way to explain how you managed to do something one day and look fine, but then spend the next few days paying for it – with your spoons.

Basically a person with a chronic illness has 12 spoons of energy per day. Each activity that you do requires a certain amount of spoons. For example getting up and taking a shower could take 3 spoons, going out for dinner could take 6. So if at the end of the day you have used more than your 12 spoons, the next day will be spent making up for the extra spoons that you have used.

It’s a very good way of explaining to people and also a reminder to ourselves. I’m clearly using too many spoons up and then having to rest the next day. I seriously need to balance out my usage as I’m up and down like a yo-yo. The problem is that I know I need to push the envelope as if I don’t try to find my limits I’ll never know what I can and can’t do. My tendency is to push my limits way to far. Then I spend the next day paying for it not only physically but mentally. I get so mad at myself as I generally know when I’ve gone to far and I just can’t stop myself. I’m currently doing ten pass ozone and I have to say it definitely gives me more spoons which is awesome! I even managed to go to the mall one day – it was rather funny that the picture said ‘I STAND’ once I cropped it, after spending so much of the last few months laying down!



So, if you have a loved one with a chronic illness a wonderful gift is spoons. So cook a dinner for them, put out the bins or pick up some shopping. Then hopefully they will have some spoons left over to go for a coffee with you.

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Who am I?

Was – independent, intelligent (with plenty of dizzy moments), successful, busy, funny (depending on how much Prosecco I and the people around me had!), quite stressed out but overall happy, without even realising how lucky I was.

Now  – ? just a mess really! I was diagnosed with Migraine Associated Vertigo (MAV) eight years ago when my life changed dramatically. It’s a variant of migraine that means I feel dizzy and tired nearly all of the time. If I try and do anything ‘normal’ this sparks of vertigo which gradually gets worse and worse until I pass out unless I lie down for hours, sometimes days. What this means is I spend 90% of my time in bed in a quiet dark room. Normal activities like shopping, walking, going anywhere bright or busy, the cinema even visiting friends who have patterned wallpaper or a gravel drive is a nightmare!

I’m continually trying new medications, all of them with quite nasty side effects (worsening of vertigo, weight loss, hair loss and sense of humour loss to name but a few) to try and find the magic one that will work for me. Fingers crossed the one I’m on now will work, time will tell.

A good friend set up this website so I could become a ginger whinger. No I’m kidding, so people can understand what I’m going through and maybe it would help me to have a bit of a rant. I have quite a dark sense of humour, I think that’s the only reason I haven’t gone completely bonkers! I clearly don’t have the most exciting of lives but I live in a small village with some entertaining characters and I’m always having blond moments (I blame the meds but I’ve always been a bit dappy!). Who knows I may even get better, and I can assure you life will be filled with amazing adventures then!

Scrap that! After zillions of Consultants all saying that they know what’s wrong with me and that they can get me better. Endless drugs and procedures I was finally Diagnosed with Chronic Lyme which was great – until I find out that nobody in the UK has a clue how to treat it. That complicates things some what 😉

 

@still_on_that_boat