Bitten Alive

dreamdaisy

Picture the scene: it's the early 70s, a Saturday night in a discotheque (remember those?) and DD struts out to the middle of the dancefloor, resplendent in a white suit, crutches freshly polished as an aid to pulling. tjt spins the disc and the music starts:

Well, you can tell by the way I walk
I'm an arthritic gal, no time to stop
The music is loud and the insects swarm
I've been down but not out
Since I was born
But now it's all right, it's OK
The drugs might take it all away
I can try to understand
Try to get the upper hand

Whether it's the PA, whether it's the OA
Being bitten alive, bitten alive
I can feel myself a-breakin', feel my legs a-shakin'
Being eaten alive, eaten alive

Ah, ha, ha,ha, bitten alive, bitten alive
Ah, ha, ha, ha, eaten aliiiiiiiii-iiiiiiii-eiiiiiiiii-iiiive -yeah

(repeat ad nauseaum)

I am coming up to the second anniversary of my life not changing thanks to humira and I have noticed something odd. I spent the first fifty years on this planet being ignored by the biting, nibbling things that torment others, but for the past two summers it has been a very different story: has anyone else on an anti TNF/meth/sulph combo noticed this? Are you more tasty (in the wrong way) than ever before? Or is it just me? DD

remixmum

I have always had a theory that my family didnt get bitten because of various meds they are on, but I did because I had nice tasty unmedicated blood.

A few years back I was eaten alive, so I started taking brewers yeast capsules, and it took a brave bug to try, (I have a vision of said brave bug, having a nip, and coughing and choking. then telling his mates not to bother)

This year since meth, folic, hydroxy, pain dullers etc, I have not been bitten at all

barbara12

Oh DD...I love it...especially the white trouser suit...yeah I had one :eek: Im not on your meds....but for being bitten alive..they always head for me...and ignore my OH

dachshund

Hi DD
i can see you dancing with crutches now you have the mind
to say i want to do it i will.
take care. joan xx

julie47

Well thats it......every time I hear the song on the radio I will now picture you doing the travolta moves, crutches and all and tony in the back ground spinning the discs.

loved your song and yes....i got it to fit the tune too.

As for being bitten....I haven't been bit this year yet.
The other day though I did use a repelant as there were lots of little black (like a miniscule lady bug) flying at me on a walk we went on. (just in case)
juliepf x

tillytop

Oh DD wot are you like? As I have said before you paint a wonderful picture and I am going to have "bitten alive" going round in my head for the rest of the day now. So thanks for that .

As to why you are suddenly so attractive to the bugs - really don't know what to suggest (unless maybe they are attracted to the highly polished crutches ). Either that or there are a lot of arthritic bugs out there, whose health authorities won't fund the drugs!

Will be interested to hear if anyone else has the same problem and really hope it improves for you soon.

Lots love Tilly xxx

penny44

Oh DD that really made me chuckle, Ive been on night duty for last two nights and am in the process of returning to day time living, due to the delights of juggling my meds round its not a happy process some may even say im a tad grumpy, thankyou that really cheeried me up.
Penny

constable

DD, only you could find the right words (good words) to fit into that song and to put the image into our heads.

That really did tickle me.

But wonder why they've decided to start biting you. Wish I could help but unable to suggest anything.


Karen xx

traluvie

DD..

Love it...
I have a great image in my head of you in a white flare suit, disco lights reflecting off you, spinning on your crutches..Tony with his collar up, dark shades and platforms..
You put a big smile on my face..

hileena111

Oh DD you are so funny......I loved it.
I can just picture you in the disco with crutches all polished and the white suit
Thanks for the giggle

Love
Hileena

dreamdaisy

I am glad I made you all smile, smiling helps, yes? I now have a total of thirteen little bites, all itching and swellling away, never mind moisturiser, it's B**t's anti-histamine cream that now covers me - that's good stuff, by the way, it really helps. Brewer's Yeast, eh? Thanks for that tip, remix, I may well give that a whirl. Plenty of brewer's yeast is absorbed via beer, but perhaps the tablets will give a little more of the required anti-bite stuff. Come to think of it, Tilly, you too could be on the right track - a bunch of arthritic bugs are liking the meds swimming around in my blood stream! DD

frogmorton

How you doin' Spotty????

I hope the horrible things have settled a bit?

Love

Toni xx

julie47

morning dd

hope the bites have calmed down.

Have a good weekend

love juliepf x

dreamdaisy

Spotty? Cheeky mare! 'Tis true, I am a greater-spotted DD at the moment, what with the bites and a lovely crop of white heads: I wonder if they are meth-related? Ye gods, this malarkey called life can get one down from time to time. Thank you for your messages, frog and juliepf, you are very kind to reply. DD

skezier

Hi DD,

Very good and I know where you is coming from but....

In your head your free and find that one and it so helps That and some very good pain tablets

I wonder if your ones are doing much and maybe a different routine could help more?

I did this a long time ago, lost somewhere in the depths of cc.... but its another way of looking at it though the song I use might not be the one you use.....

Its the head free thing.... you don't have the arthritis your body does and though your trapped in that you can escape it and just get out and away from the pain.... hell I sound like a full card carrying member of the raging loony thing.....

but...

Wondering through a meadow of hay,
I am sick of pain and want to just play,
Run through the grass making big tracks,
Give a job to the news paper hacks,
Crop circles Page and I will make,
I might actually also cook us a cake!

Come on you lot its time to go,
We can run fast and no longer slow,
And pat the yeti and the donkey in a hat,
We can get over there and the winner is sat
Already in the meadow lent against the tree,
You know what that the real me!

I shut my eyes and see sea and cliffs,
Guaranteed to help my soul to lift,
You come to cus its always there,
A place in your heads that’s always fair,
And sit for a while and feel its peace,
Cross that river there’s a golden fleece!

I will race you there and I will win,
Hey don’t sulk its my head your in,
It’s a bit mixed up and full of wow,
But here all those troubles get up and go,
It’s a good place here to be,
Come on you lot come with me


Its another way of looking at it.... aid the moron who spends so much time in her own world that just maybe its been done too much Hugs and hopes flower. xx

Oh and the fight back......

For this You’ll Pay!

When I was a kid they’d always say
“Look after your bones or you will pay
In later life or may be quite soon“,
“There’s no need for this gloom and doom“,
I used to think as I hurt them again
And used to stay in the cold and rain,
And never got dry and never took care,
A delicate child, I was never aware,
I’d be a fool while others stood clear,
And got on things as I knew no fear,
Thump and twang as I hit the ground,
It never was a pleasant sound,
When I got home Nan would say
Again for this one day you’ll pay,
Now I am older and paying the price,
Stalking my bones like cat and mice,
I wouldn’t change the things I did,
Or just be quite and always hid,
I lived my life and it came with a price,
I’d do it again with in a thrice,
And still to this day I have to say,
**** the arthritis I’m off to play!

dreamdaisy

I will experiment with printing your words off tomorrow, I am too tired to wrestle with my printer tonight. You utter angel, thank you. I was going to respond with the Arthritic's Prayer but it's too gloomy. I give you a Spike Milligan parody instead.

There are holes in my bones
Where the pain gets in
There are ever so many
That's why pain is grim.

(No, still gloomy)

I am off to pat a yak. DD likes this.

skezier

Hi DD,

Its another way of looking at it and be honest its how I manage...... If you can separate your body from you its somehow easier....

The yeti is quite friendly now a days.... I wouldn't try taming big foot cus he doesn't exist

You have to see the the other side else you sink..... I do anyway and for thats there is big thumping trace music to shake you out... even if you do feel your brain liquidising and coming out your ears (for that sentence I apologize to visualisation........ )

Life is a learning curve and sometimes the tankers bring muck..... Seeing the freedom is important...

Oh Spike milligan's 'I told you i was ill' was good as well Hugs and a bucket of freedom xx

dreamdaisy

I know what's causing the gloom and yes, it's the arthritis. Like the fragrant Lady Di there are three entities in my marriage, Mr DD, me and the monster that inhabits my body.

Things aren't going at all well. I've reduced the pred to 5, utterly futile and pointless but I am still trying to focus on the goal of better long-term health (and no, that's not ironic), Mr DD has two weeks off work coming up very soon but has said that if going away is too much for me he will cancel his leave (despite being fully booked for the rest of the year so will not, yet again, be able to take up his full leave entitlement) - how can I do that to him? He is so supportive, so encouraging, but the decrease in my mobility (despite last Monday's whack of humira) is very apparent. He says that if going away will make things worse then it is not to be done. Things will still be dross, however, with staying at home plus I will be able to factor in a lovely dose of guilt over spoiling his summer. I could not cope with that.

We will go away, to hell with the arthritis, that is the very least I can do for him, that way we can spend some time together but I will not boost the steroids for that time to help. That would just undo the good work I have done so far, and as the whole point of stopping them is to stop further bodily deterioration in the bits other than my joints then I have to learn to do without. No time like the present, yes? DD

julie47

Hi dd

First of all well done on reaching 5mg of pred. That is a massive reduction.
I can understand that you are not feeling brilliant at the moment and are also worried about having a holiday, but you must go. A holiday is just what you need, a time to relax and do what you want when you want.
If you are struggling with walking, hire a chair or scooter. Mobility shops may offer this service at a weekly rate. I think d.i.a.l offer this if you have one in your area.
(come on I will help you pack)

How are the bites? almost gone I hope. We went for a walk today round a lake and there were lots of black midges above my head. I think I have got aaway with no bites.

Skez the poems were brilliant....hope you are ok and enjoying some sun.

Take care
love juliepf x

hileena111

Oh DD.....that is fantastic.....the reduction...... and the strength you have to do it.....
Yes why not hire a scooter....I feel more independent than having OH pushing me around in a chair plus the fact i dont trust his driving Even though he was a driving instructor in the army
Most places have a shop mobility scheme.....Some will let you hire them for a period if you leave a deposit {returnable} some of them are free and some like our Metro Center charage £2 a year and then £2 for a full day anytime you want it out but I'm sure if you're taking it out longer it would be cheaper.I hve a book that tells you what places do what....whether they charge/have to book in advance etc.....It just means that you would have more freedom and so would Mr DD.....he wouldnt have to worry about your mobility....I know Peter used to worry and we got out of the car and just did a short distance.....now we are up and down loads of streets and places....in fact last year he said to me "Lets stop for coffee.....I'm tired" That used to be my line
Anyway if you fancy hiring one on a daily basis tell me where you're going and I'll have a look in my book and see what it says.....sorry its upstairs at the minute and I'm so sore and planning to go out so thats it until i go out...no more up and down stairs

Love
Hileena

stickywicket

DD, go for it. You need a holiday. Mr DD needs a holiday and, as others have said, there's no reason why it should be harder on your joints than staying at home if you plan well. In fact, if you aim to eat out a fair bit, it'd be less stresful for them as you'd have less work to do. Go for somewhere where you can hire a scooter and, if you've never done one before, try to get a trial run in first as some are easier than others for those of us with several joints affected. (4 wheels are much more stable than 3) Personally I'd take a wheelchair too (You can hire them) as you'll have more choice of restaurants and bars (should you require any????) with a chair that can be folded up. If it's your first time in either scooter or wheelchair you'll feel a right prawn but you'll get over it.

dreamdaisy

Wise words, girls, wise words. I will investigate scooter/chair hire once we have arrived in wherever we end up (nothing booked yet, apparently Wednesday might be the day we get sorted!) and as for feeling a prawn, why would I? Dignity and vanity both shot out of various windows years ago (independence is struggling to follow but I have other ideas on that!) these things will make life easier for me (and him) so what's not to like? If it's a chair I shall be doing him a favour by giving him the opportunity for a good cardio-vascular work-out, epsecially if we end up somewhere hilly!

jillyb1

Good for you , DD , you go girl ( or similar phrases ! ) ; when we decided enough was enough ~ best decision ever ! I originally had a motorised scooter which was great , but as the hands became more twisted and mishapen was no longer able to drive it . Now that I've moved onto a traditional wheelchair the world has opened up for us ! We also discovered that we get the most amazing view at the theatre and concerts now that we can sit in the " crip " section ! If you don't feel up to a holiday away ; then a holiday at home can be good too , restaurants , museums , theatre etc etc . Hope you begin to feel better soon , love and hugs . Jillyb

stickywicket

dreamdaisy wrote:

I shall be doing him a favour by giving him the opportunity for a good cardio-vascular work-out, epsecially if we end up somewhere hilly!

Ah! I should have mentioned that, DD. If Mr DD is anything like Mr SW, if it's hilly you get ejected from the wheelchair. (But you have the satisfaction of providing great amusement to passers by.)

julie47

stickywicket wrote:

dreamdaisy wrote:

I shall be doing him a favour by giving him the opportunity for a good cardio-vascular work-out, epsecially if we end up somewhere hilly!

Ah! I should have mentioned that, DD. If Mr DD is anything like Mr SW, if it's hilly you get ejected from the wheelchair. (But you have the satisfaction of providing great amusement to passers by.)

oh sticky I can just see mr sw pressing the button

DD I hope you find somewhere soon.

Take care
juliepf x

hileena111

Thats the right attitude DD......At first I baulked against a scooter but I remember going round the Metro Center last Christmas....and everyone was hot, bothered, shoving and pushing and I was merrily driving round...faaaantastic!!!!!!!
If you ever do get the chance to do the 6 week Challenging Arthritis Course they will tell you that sort of thing is a "Coping mechanism" I like that

Love
Hileena