should I stay or should I go?

[elsa123]

Went to the doc this week as I have a chest infection.

Different doc from the one who thought I had ra and sent me to see the rheumy.

She found a letter from the hospital which had been sent 10 days earlier saying that my rh factor was 69, 0-15 being normal.

Asking the doc to start me on mtx and hydro, and flu and pneumonia jabs first.

I think that had I not gone about the chest, they would never have pulled up that letter and I would have remained in the the dark with no treatment for months.

I have been really struggling in work.

I fight my way through it, and at the weekend I just stay in bed trying to recover.

I spoke to my boss on the phone today, and she acknowledges the fact that work is manic, and every last one of them would give up if they could.

I am so worried that I can't cope, and in my job you have to be on the ball at all times, as I am dealing with prescriptions.

I am finding it hard as my hands and feet are affected, I am on my feet for 6.5 hours a day, and the pressure is on from the moment I start until I finish.

I go home and collapse, even walking home feels like I am walking on pebbles with no shoes.

When I get home I collapse in a heap and oh takes over in the cooking and walking and feeding of us and the dogs.

All this for the minimum wage.

I am now worried about how I will be feeling when I start on the meds.

My oh will be starting a job in May for 3 months, 7 days a week for 12 hours.

Don't know how I will cope.

My boss is behind any choice I make, but at the end of the day, if I give up, will I be entitled to any benefits?

I have never claimed anything in my life, and at the grand old age of 54 this wasn't in my plans for the future.

To be honest, if I thought that I could claim something to help us financially, I would give up in the blink of an eye. I know my limitations, and I think I am just about reaching them.

It's such a hard thing to accept..a year ago, I was full of fight and the energy to keep on working.

Now, I feel that I need some time. I go to bed and think that if I just had a rest then I would feel ready to carry on, but it just isn't happening, I have the rest and it makes me feel better, but not enough for it to stop that struggle and the knowledge that I still can't perform.

It's not just the aches and pains, and the clumsiness and dropping things and the complete blanks I get when a customer comes in and requests things that I know I know but just can't get my head around, cos it's in a constant bubble, it's the thought that I am not actually up to the job anymore, and seeing my colleagues having to bite their tongues when I am acting like a complete idiot because I am existing in this bubble that seems to have formed around me.

Sorry for the rant, but don't know how else to put it.

[Hidden]

Elsa you are very normal and it's a very, very hard thing for everyone who gets a diagnosis to come to terms with. Plus that's a pretty awful way to learn something I agree - it makes you feel that they just don't give a damn somehow? My GP took my Rfactor and ESR/CRP and said he didn't expect them to come back positive but if they were he'd phone me within about 24 hours. I waited with baited breath thinking that if it wasn't RA then it would be a post viral arthritis which he thought it was. I heard nothing for 2 and a half weeks and had forgotten about the possiblity of it being RA - was just putting all the pain down to the post viral thing when the phone rang one evening and it was him sounding quite concerned - RF positive ESR 65 or so and could I come in first thing in the morning and he was going to put me on Sulphasalazine while I waited to see the rheumy (probably in four months time). So that was the beginning of the shock time - just over a year ago now. And then it all got much more protracted.

What I'm trying to say is that lots of people wait for months, years and even decades with their rheumatoid factor negative but knowing full well that something's very wrong so it's not the method of being diagnosed that you should be worrying about because in some ways you have been pretty lucky getting diagnosed so straightforwardly.

I think you should try and wait until you've started on the meds if you can because you may find they control it very effectively - this does happen for many although it can take a while to get the right mix drugs for you.

Don't start thinking of benefits and quitting work yet - the problems you envisage may never happen and if you have a nice sympathetic and supportive boss that's brilliant! Take care - we've all been where you are and know how hard it is - keep coming and we will keep supporting you whenever you need it. TTx

[bpeal1]

Please contact the NRAS helpline 08002987650. They are very friendly and a great support. They will be to talk through what options are available. There is help available to keep you in work if that is what you want. They can also talk you through what benefits could be available to you.

It is also worth looking at their website.

Being diagnosed is a scary time but it does get better - especially when they get the right drug combination for you.

Good luck

Becky

[sylvi]

Elsa,you can apply for dla without having to give up work. It is not related to you working. You've worked hard why shouldn't you claim. As has been said before give the drugs a chance to work,also see if your boss will get you a stool on wheels to help you.

Hope you soon feel brighter. sylvi.xx

[Kathyfitz12]

Ask firmly to go back to the specialist rheumatologist. Gp's are well meaning, but when I first presented with what turned out to Sero Positve Palindromic RA, the GP I went to at the time said it was "probably a bit of arthritis and to be expected at you age" I was 58 - and told me to take Aspirin!!! There is a lot of help availabe but you may have to be quite assertive to access it.

[Hidden]

Hi Elsa, sorry this is quick...

Please remember you haven't started your medications yet, they may work really well, they do for a lot of us, myself included, I've gone from every joint affected and no mobility to 90% better...

I know it's hard to imagine that right now, it's so hard being newly diagnosed but there is hope.

Can you take some time out from work, give your meds time to work and get your head round it all? can your GP sign you off for a while?

[chrispe]

I agree go for a short sick break before making any decisions that affect your long term. You can geet dla but it takes up to 3 months to come.sick keeps your job safe and options open good luck

[helixhelix]

Yes, this is the worst time. It will get better once you get meds sorted, and you'll be amazed. Just try to look after yourself for the moment, rest and keep pushing for treatment. Good luck. Polly

[Ailsa-NRAS Partner NRAS]

Dear Elsa

I am currently working with a group of international researchers and we're looking at the impact of arthritis on people in paid employment with a view to determining outcome measures about difficulty and productivity at work due to arthritis for use in clinical trials. Your story is very powerful and encompasses many of the things we are discussing at the moment. I am going to a research conference in the States where we will be presenting and voting on our work and I wonder if you would allow me to use your blog, anonymously of course, to illustrate the difficulties people face to the medical audience we will be addressing. Please let me know if this would be OK with you.

Many thanks

Ailsa Bosworth

CEO, NRAS

[elsa123 in reply to Ailsa-NRAS]

That would be fine Ailsa, if you think it would be of use to your presentation.

Nic

[Ailsa-NRAS Partner NRAS]

thank you very much! If our helpline team can help you in anyway, don't hesitate to ring them. I hope you don't have to lose your job, there are ways we can assist and once you get your disease under control, you will start to feel better. I've had this rotten disease for 30 years and had 18 operations so far and still working! I know it's easy to say but try and stay positive because it won't be like this all the time.

Ailsa

[elsa123]

Thank you all so much for taking the time to reply.

This sort of thing must come up so often.

My job is in the shop attached to the pharmacy.

There have been major cutbacks in staff, sick leave, and no overtime.

I am responsible for accepting the prescriptions and handing them out.

We deal on an average I would say of 300 scripts per day.

I also have to serve the customers, clean, hoover, put the rubbish out, stock checks, cash pick ups, end of day till...counting the money and balancing, 2 stock deliveries per day, answering the phone,cleaning the shelves, price changing on a daily basis, offer changes, and most important of all, making tea and coffee.

I also have work books to get through and will have 2 one hour exams.

Don't think a stool with wheels would be of much help lol.

Even though my boss is understanding of my circumstances, as she said, "There are no passengers".

I only started there last August, and it's only in the last 3 months that my hours have been extended.

Apart from one other person, everyone else has been there a long time, and can do the job standing on their heads.

I also have another part time job in a health food shop, which is a doddle in comparison, but no chance of more hours.

The thing is, I can cope with that job, and I would love to find something else similar, but jobs are hard to find and I was very lucky to get work in the first place.

My other concern is that I will be dealing with sick people when my immune system will be compromised by the drugs.

I was awake half the night thinking and thinking, and in my heart I know this is the wrong job for me under the circumstances.

However, I live in a small town, and people will get to know why I left, which begs the next question...who would want to employ me?

I have been racking my brain trying to think of something I could do that will be less demanding.

I am a qualified reflexologist, but stopped doing that some time ago after a whiplash injury, now my hands just wouldn't work.

I also made my own glass jewellery, I also knitted and sold things...I have just sold that stuff to someone. I also made hand stitched leather dog leads and collars.

So, all the things I used to do all involved having nimble and strong hands.

I now have sausages in their place.

My doc rang today, the one who suspected ra in the first place to tell me she has seen the letter, so I am going to see her on Monday as she wants to talk to me about the drugs before I embark on them.

So, even though I think my decision is made, I will talk to her first.

Thanks for listening

[Hidden]

Well Elsa/Nic I think you are doing brilliantly just coping with all this and I really hope at the very least that you can get some time off - especially with your OH working 7 days a week. I've been a practicing artist working in embroidery currently and I have found that things have got much better since I started on the Methotrexate - the sausage fingers have gone down and my knuckles are much less swollen and wrists only ache a bit now where before I couldn't even lift the duvet off my shoulders at night or turn the key in the ignition. Basically I'm embroidering again and although my brain is a bit foggier since the RA kicked off I now at least feel confident that once I'm on the right med dosage and combination things will probably return to some kind of normality so please don't despair about your creative pastimes - I'm sure things will improve for you soon.

I'm really glad to read that your blog will be used by NRAS for this purpose as I think it really does speak of the suffering so many go through in the work place with this disease. Take care and good luck with your GP on Monday. Tilda x

[elsa123 in reply to Hidden]

Thank you Tilda, that does give me hope that I can do the things I used to love doing again.

I had to laugh.

Yesterday, I went to bed in the afternoon, and watched Edward Scissor Hands, never seen it before, but I could so relate to the poor thing and his difficulties :).

My hands are not half as bad as yours were.

I couldn't type a few weeks ago, and I still find certain things difficult, but my pain is a lot milder.

Nic x

[Hidden]

Oh I'm pleased if it's made you feel a little better at least Nic - but remember i'm self employed and don't earn a bean presently (OH a contracted night care worker) so from where I'm sitting you're the brave one having to dispense out there day after day on your feet. You may find resting splints helpful at night if you can get referred to physio and OT now you have a diagnosis - they have helped me a lot. If possible start on the lowest doses of MTX and Hydroxy and move up very slowly because I'm on my second raised liver problems from going up a dose with the MTX now and have to come back down. The first time this happened I leaped up a dose too fast so just try and be as patient as possible. And as you really sound at the end of your tether in terms of work and exhaustion I really would try and speak to your GP about getting signed off work for a while until the meds are helping as Williby suggests. You can't take on the problems of your workplace you just have to focus on getting yourself back on track as no.1 priority. TTx