The Listening Project

Yesterday afternoon 'The Fella' and I travelled into Ipswich to meet up with a twitter buddy who works for BBC Radio Suffolk - a bit different to our usual Sunday routine! We were to be part of a really exciting project being run by local BBC radio stations, Radio Four and The British Library....*excited face*

I had heard of The Listening Project through listening to snippets of some of the conversations featured on Radio 4 and thought it sounded so interesting that I was very excited to be asked if I would like to 'have a conversation' which would be kept at The British Library for future generations to have access to. Who to choose to speak to? I have a couple of friends who are also 'Radio Four Bores' and one in particular would be great to talk to but she lives too far away...the conversation needs to be half an hour-ish and it's supposed to be an opportunity to talk about things you may not have had the time or chance to do so before...choosing a suitable conversation partner is harder than you would think! 

I wanted the conversation to mean something, to be of use to people and not just a soundbite of the times we are living through - I wanted people to know how it feels to have an invisible disease, the obstacles sufferers have to overcome and how a thoughtless remark or comment can be very upsetting and that we don't 'just have arthritis' like old people have....hmmmm!

'The Fella' was less enthusiastic about being recorded talking to me...for a week he put forward more suitable (in HIS opinion!) candidates but eventually I wore him down and he agreed to do it...which just goes to show what a brilliant man he is!

We talked about a LOT of different stuff (not just our creaky bones!) but it was noticeable just how much both our lives are affected by Rheumatoid Arthritis - almost everything we do has it lurking in the background and believe me *it* makes sure we know it's there! The other thing I noticed was how incredibly strong and brave a person suffering from an incurable, chronic condition has to be and how much I admire 'The Fella' for doing this without fuss for 20 years, he has a 16 year head start on me!

We also laughed, we laughed a lot!

Couldn't have done it with anyone else really...

Nic x

What happens on Humira Saturdays?

 Well the only side-effects I am aware of is a feeling akin to being smashed in the face with a shovel but as that doesn't hurt as much as having RA does so I can cope with that! Makes blowing my nose and kissing the Fella tricky but then RA makes a lot of things like that tricky too...so having passed my assessment and being able to stay on Humira injections aided by a low dose of Methotrexate which helps to stop my body rejecting the Humira. 

Every other Saturday morning I get up and when I get the milk out of the fridge for my morning cuppa I also get out a Humira 'pen' - it's refrigerated as it needs to be kept between 2 and 8 degrees C but it stings if you inject it when it's TOO cold...half an hour on the kitchen table makes it about right and I'm supposed to check that it's:

a) in date

b) has no flecks in the liquid

c) is not damaged

 Making sure everything is squeaky clean (including my pimply, pale thigh here!) I find a fleshy bit and follow the steps...I have heard that patients using Humira in the States get a talking pen which they can practise with but no such fun here in the UK unfortunately!

The needle is in that white tube and step one is to take the lid off...so far so good!

 Step two is to take the lid that covers the push button off...both recyclable BTW! I'm a bit feeble in the hand department and find it hard to grip so I use both hands to do the job and still struggle a bit but would hate anyone else to have to do it...

 (When I did my first jab on my own I had worked myself up into such a state and it was fine, in fact I barely felt it! The pain from RA is so much worse TBH...)

 Pushing down hard enough to push the white tube back - this makes sure the needle goes in and none of the drug seeps out...urgh! Always makes me feel a bit sick this bit - getting the angle right so I can see the little 'window' is a bit of a palaver but I can just about do it now! I have to count to twenty....slowly and try hard not to *jump* when I press the button!

In answer to anyone who thinks it's 'just a pen, a little prick' it isn't ya know - it's a bloody great needle and waiting for the twenty seconds to be over as you hear the liquid going in (yes, you really can!) seems to take forever!

 But....then it's over! I check the 'window...

 ...place the packaging and lids in the 'green bin'...

 ...place the needle in the sharps bin that sits next to the bleach bottle with the child (and Nic) proof lid that lives in the bathroom...

...go finish my cuppa and get on with my day!

Hope anyone waiting to start on Humira finds this reassuring and helpful, Nic x

PS. I still have a lot of pain in my feet, hands, hips and knees but can definitely see some improvement - I don't have 'sausage' fingers or toes right now and have been wearing normal boots for months now. *smiley face*