Hi everyone,

Just a good old moan. Husband is off on a residential this week so just about managing 2 minute chats whilst he trys to make sure all the students are safe, so nobody to talk to apart from this screen, so being the nearest and dearest you get it I'm afraid!

So I saw the consultant yesterday for my 3 monthly routine check which was unexpected but he was covering the specialist nurse's list as well as she'd rung in sick so even more pressure to make the most of your 10 minutes because he was running late and the waiting room was filling up etc. So between him and the OT it went a bit like this, you can probably work out who's saying what.

The big question, is this really as good as its going to get? Yes, you're doing really well, yes I know compared with before Xmas but this is still pretty rubbish, still can't work out what I can get away with. But you've got RA what do you expect? You're still doing too much, cut your hours, stop doing so many social things, nap in the afternoons, don't do anything for more than an hour then rest for 20 minutes, you've got to re-charge your batteries, take it easy. But if I did any less I'd be comatose most of the time, life isn't like that, things happen, stuff to do, I need to have fun as well as work don't I? I need to earn a living, I know I've got to stop doing my job at some point and do something less physical. I'm afraid life is like that, get on with it, yes, pack in your job as soon as possible, its not doing you any favours, find something nice and sedate, only part time mind you, there'll be a cure in the next 40 years, so what, I'll be dead of starvation and homeless by then but thanks for your comforting words.

So the pain in my feet and hands that's pretty permament and makes me fall over and drop things all the time etc that's going to stay the same? Oh yes, this is the joint damage, here, here and here, nodules there and there, don't expect any improvement with any of that. So why can my friend farm all the hours god sends and not take any painkillers or anti-inflammatories and get away with it. Life's not fair, everybodys' different, men don't get it as bad. So should it really be 2 hours before I get going in the mornings? Hmm, that might get better, really, well could do but don't bank on it.

So just keep taking the paracetamol and diclofenac and go away, next please. But the diclofenac makes me feel sick can't really manage more than 100mg otherwise I don't eat and then energy levels go down even more that sort of thing, bit of a vicious circle really. Sure its the diclofenac and not the MTX? Hmm, think so. Right so just stop taking the diclofenac, make sure its that which is making you feel sick then see your GP about changing anti-inflammatories, something non-steroidal. Yes, don't really fancy steroids, well it could come to that but if its the MTX we'll change you to injections its really easy, oh great I would just love to stick needles in myself every week. If not endoscopy for you, people can have ulcers and not even know it. Oh great another thing wrong with me then? Well you may still be 30 in your head but you're 45 now, no 22 actually, so everything's just going to fall apart at 45? Well maybe not fall apart but your body's continually changing, its inevitable (very zen methinks, bring out the finger cymbals) So the periods thing then, oh yes could be the MTX but you're probably just menopausal, at 45, yes probably, just keep an eye on things with your GP. Off you go then, thanks I feel so much better now.

All done at break neck speed. So on the scrapheap then? Resigned to history already. I'm afraid I'm not ready for the rocking chair and knitting, if there's something I want to do badly enough I'll do it and take the hit. But enough of the bluster, in the real world, which has been hitting home since 4.00 a.m. making me teary, I really need to pack in my business and find a job which is far less physical which is obviously easier said than done in the current economic climate, finding something near enough so I'm not spending all my money on fuel, not easy in a rural area, or something I can do from home or what or what??? That's the question, what the flaming heck am I going to do and prevent homelessness and starvation in the meantime? Not expecting any of you to come up with a plan you had lying in a drawer somewhere just for this moment, but I just had to spill all to somebody!

Right so the birds are singing, its raining at last, price of wheat will drop, our vegetables will grow fatter as will the weeds, couple of big orders to get out, soap to make, cats to feed, washing to do, washing up hasn't been done since husband went away on Monday, kitchen floor is a health hazard, better go back to bed then!

Sara
x

hi sara

what can I say but to let you know that I think this is pants and I don't like being told things either.

however

you are IMO going to have to change the way you think about the illness and take it more seriously and find some way of really putting yourself first. You have a progressive immune disease. Even with well controlled disease you cant just expect your body to do what it used to- its trying its best to tackle stupid RA let alone washing floors that frankly someone else SHOULD be doing. If you work all the hours God sends in the way you are doing you wont be able to do anything and make the situation worse. If you take a step back from things, which might mean drastic changes like moving or getting direct payments to pay for care, or selling the stuff that costs you so much to run.

I think this is where professional life coaching/ health psychology comes into its own. Ask the GP for a referral for some support.

Really its change management and putting your head down and raging about how unfair it all is (and it IS horribly unfair) is not going to get you through things.

FWIW I could never give up anything for my RA, what I could do is do something else instead.

work out priorities.

mine look like this

1) Children and family relationship
2) Home and home life
3) Me and things I need to be doing
4) Church and community

so to do 1) I had to stop working and move house. We sold the car and got a cheap banger for richard. Him working was important on lots of levels so that was a priority too.
I now, through direct payments employ someone to wash and dress me, I now employ 2 nursery nurses/ PAs and a childminder so I have time with my children with their support. Someone cleans for me/ does house stuff.
2) I have a laptop with a spreadsheet. The Gob still works so I ring up people and feel useful. I do a lot of lobbying for NRAS and adoption uk too...
3) I am doing a course in social enterprise on a Tues to keep my brains going- also done OU in the past.
4) I attend church when I can and get visits from vicar, I also keep in touch with friends and community through social networking and days out (which nearly kill me but are so worth it!)

I'm sorry if this reads harshly but you are going to HAVE to adapt and think laterally and this ability to be resourceful is something that you need to develop. I also happen to believe that you have it in you....

One thing is to try ringing NRAS and get them to pass you to a phone volunteer who has had to make changes to life because of their illness and how they did this. its always One step (or hobble) at a time. it never does to look at the whole picture. just the next step.

hi Sara,

it's certainly a jolt when reality sets in .. i do say that i haven't totally come to terms with it the pain is telling me different.

i am not under control a year on, having failed on Methotrexate and Hydoxy but i had to wait 6 months to fail on Hydroxy which took me to to end of May. i spoke to my Rheumy Nurse yesterday and she has now confirmed that the relevent paper work has gone off to the PCT ( they failed me on it a month or so ago as i hadn't passed the 6 months )

i am finding it hard to be positive at the moment, i went to do some shopping this morning and found a disabled bay at Tesco's got my bag out of the car found a trolley and then realised i had left my purse at home having used my payment card for something over the phone yesterday. well it felt like the end of the world having to get back home ( 3 miles ) and start all over. in fact when i got back into the car i sat and cried. i have so much pain in my knee's, left wrist etc. i can hardly turn a key.

i can't even have a Depo to help as it's too near starting the Humira now.

i have to say to myself things have to get better for me, i know i'm never going to me the person i was ( although inside i am ) and i know how many people are suffering for all sorts of reasons in the world.

i really believe emotions play as big a part as the pain with RA, so i am digging deep at the moment.

i realise i am " lucky " that i don't have to go out and earn a crust, as my hubby supports us.

i think coming home from a not so good Consultation can really set you back,

why not write a list of things you can do and things you can't, putting it down on paper sometimes help unscrabble the mind. and hopefully the list of things you can do will grow longer quicker than the things you can't do.

i'm sorry i have no magic answers, just telling you above to let you know you're not alone right now.

also i agree with Jenni about phoning the NRAS helpine they have been wonderdul to me when i've needed a chat,

hope you can start to see your way through this soon.

take care

Suzanne x

Hi all,

Thanks for your lovely replies, Starting to feel a bit more positive today, after a bath last night and lots of sleep. Without husband here to help me out of the bath it was an interesting experience but the determined stubborness had set in again. Its just so hard when you're stewing over things by yourself and only the cat to listen to you and they really don't take any notice!

I would rather my consultant was straight with me if a little blunt, it really does help to put things in perspective and re-align my expectations. I've now realised that my just ignore it and get on with it approach is not helpful, yes should have got there before but a good old dose of denial has helped the last couple of months.

Jenni, lovely to hear from you and sorry about your continued hospital 'visits', I love your plain speaking, don't apologise for appearing harsh, sometimes I need a good talking to to get me out of sulky teenager mode. You've helped me realise that I've been tinkering around the edges with the changes I've made in my life and yes I do have the resources to do it they were just buried very deep the other day. I now have the energy to get a plan together, but its going to be complicated and tough going, the business won't just untangle or disappear by itself very easily. Long talks with husband coming up!

Sheila, those men in the white coats will have to make a trip to Cornwall too! I've tried lots of techniques to deal with the pain etc the latest is some maniacal giggling rather than wincing or screaming out loud. And the good things are really good I just hate unfinished business, need a technique to ignore the kitchen floor!

Suzanne, I wish I could turn that key for you or have been there to lend you the money to go shopping, those last straw things are so tricky. And this is the thing, apparently it is controlled for me, I'm struggling with what that really means now, I can't imagine what things must be like for you and others having uncontrolled disease for so long. If I still felt like I did before Xmas then I'm not sure what sort of state I'd be in, that's why I feel such a fraud moaning so much and feeling sorry for myself!

Jackie, thanks for your kind words about my typing etc. I knew that grammar school education might come in handy one day. It's certainly food for thought and is on the plan already.

So the big orders and the kitchen floor are going to have to wait, hands won't let me anyway, I've got to start working on my plan!

Sara
x

Hi Sara
Just to say glad your feeling a bit more positive today and had a good nights sleep.. I think we all feel really down sometimes.. Some days are not too bad and can be plodding along and the next day its like a bolt from the blue and you wonder how to get through it!! I love your sense of humour though dont lose it! Take care Love Ceri xx

Hello Sara.


Gosh what sort of consultation was that. Poor you. I love your 'post' writing as stated below
your punctuation etc. is excellent - Write a book. Perhaps about the life of an RA sufferrer. - I'd
buy it.

I am fully aware that when you are down with pain etc. it is difficult to buff yourself up and
to have had hubby away did not help.

Hope you feeling better Take care Rose

Right then, so yes, me, me, me again. Did what I was told, huh, makes a change. Stopped the diclofenac and within 2 days hands not functioning in any capacity, good job husband was back to help out with the toilet business, gotta laugh at moments like that. Still feeling slightly sick whilst not taking it but without any hands, unable to drive and stranded in the depths of Cornwall took an executive decision to start it again, can't be doing with this no hands stuff! So back to the good old nausea but hey losing a few pounds so not the end of the world, then this irritating little pulsating thing underneath my eyes starts and when I woke up this morning lost about 2 pints of blood in a nose bleed. Blimey, haven't had one of those since I was a kid. So scrabble around for all the info leaflets, what drug's causing this then or is it just one of those things, is it the RA, total paranoia setting in!

Decide not to worry about it, going for routine blood test this morning, I'll ask. Two for the price of one on the needles, but I've had 2 cups of coffee, a glass of fruit juice and 2 pints of water, also managed some breakfast, of course I have blood, why isn't it coming out?! Maybe you should have been there first thing to catch the stuff coming out of my nose?! Asked at the dispensary for a leaflet on diclofenac, sorry can't give you one without a repeat, but I don't want any more, probably need to change them I just want to check the side effects, sorry go to the chemist and see the pharmicist. Pharmicist, could be just one of those things, yes could cause bleeding but usually stomach, but I thought it could cause detachment of the retina as well, is this what's going on with the eyes? Don't know, great, see your doctor, got an appointment for 27 June, if it carries on go before then, ok thanks. Methinks maybe give the rheumy nurse a ring, check the internet, nearly lunchtime already, blimey why does this all take up so much time?!

To more important things. Big pow pow with husband, result, a long list of positive things to be working on to try to get our lives in some sort of order without ending up in the workhouse, that's quite funny really, workhouse! Not sure it's drastic enough but time will tell. The first test has already come this morning, an email from a customer with an order we had decided to say NO to, can I resist the temptation?!! Yes, I'm strong, I can say NO, it'll make me feel better, it'll be a relief, it'll help with the pain and inflammation, it's a positive thing to do, we need to concentrate on bigger, better customers, but she's really nice, she's got a lovely shop, she's been with us for years, its on the way to somewhere else we've got to deliver to this week, its not that big an order. Cor blimey, remember those Just Say NO adverts its one of those going on in my head! But I will find the words to say NO its a case of having to, no choice, just do it woman, once you've done it once the next time it will be easier.

This sounds like a passage from my book! Maybe one day.

Sara
x

Hi Sara,

The way you write, you could easily write a book! Perhaps it could be your new job?
Sorry things are so tough for you right now, hope it gets better for you soon.

Love, Doreen xx

hi Sara,

sorry to hear you've been struggling.

i really do feel for you when ou have to re-evaulate your life and work situation ... as if you don't have enough to cope with the RA.

i do think a call to the Rhuemy Nurse might be beneficial, i know i rely on mine when needs must.

do keep us posted in how you are doing,

Suzanne x

Again thanks for your support.

Quick update, we have a list, I have started work on it, I feel better for working towards something, I rest today, I play tomorrow, I rest on Sunday, I work on Monday but not too hard, I take as much diclofenac as I need to keep me going until I see the GP on 27th and put up with the nausea, I haven't had another nose bleed yet, my white blood count is down from last month so whatever the infection was it's going, I said NO to the customer, I said NO to a new customer, I am staying positive (until the next time), I have bought new handles for my kitchen cupboards so it doesn't hurt when I open them, if Dave doesn't fit them within the next month we get a man in, I now have an electric toothbrush, I've rung a man about cleaning out our gutters before they fall down, we've decided not to worry about the house being a health hazard, I rang a friend for some help yesterday (this is a real breakthrough) but she came round and was pleased to help, what was I so worried about, I've ordered all my Access to Work kit and filled in the claim form, I've talked Dave into the possibility of having a gardener at some point in the future, I've decided not to go up country next weekend for a family do which I don't really want to go to anyway, it was a 'duty' thing, I look after myself more rather than put everybody else first, I've started writing really long sentences that ramble on forever, I've become a bit boring now, sorry.

Sara