Help.... and advice!!

lozzC

Hi... I have posted the same somewhere else but it has been suggested here might be more helpful!

I'm 23 and newly diagnosed with RA. I have been really struggling with pain, nearly everywhere and fatigue this year. Its affected my job (I am am a teacher, with a boss who isn't very understanding), its affected my home life and I am feeling fed up, lost and pretty rubbish to be honest!

My GP and consultant have been great and worked really hard to get a diagnosis.... Although steroids haven't helped me, I am being started on Metatrexate this week... this is also scary and I am not sure what to expect.

I am struggling at work due to the demanding physical nature of my class. I don't feel like I am able to keep up with everything. My contract at work is coming to an end this July and I should be applying and looking for jobs. However I am never sure how much to say about my RA... I know people are not meant to let it affect decisions about who to employ but when there are 80 people going for one job...
I would also love to go part time at least until I can get the pain and swelling under control but I don't know what options there are for me.... It's a big pay cut and I am not sure I could cope with bills ect

Sorry this seems to be a lot of things all at once.... I am pretty confused with life the universe and everything at them moment and would love a friendly 'face'!

Any advice/enlightenment that anyone has about home/work/anything I would very much appreciate it!! I feel totally lost right now!!

x

pinkbritishstars

Hello

Nice to meet you but sorry that you had to find us.

I know what you mean about how much to declare...

Sorry haven't got much advice to offer - sorry.

But do keep posting.

xxx

skezier

Hi lozz,

Its all really scary to begin with flower but as the meds start and start to hep it does honestly get easier. I hope as well as the mtx you have some decent pain control as well?

Work wise can they ease any of your duties at all? Just even something as simple as a new chair can really help with some bits of work. It might eb worth asking is there s a oky health thing for work as well in time? Might eb a bit too soon just now but its good to find out all your options as it helps with the confusion and the worries a bit.

The mtx its self... don't worry too much as most of us take it with no real trouble and it can so help. I did have a few problems still can at times (not least cus i continually forget to take it now a days) They can give you thingas to hep with the ore common side effects and your very unlikely to get worse than those.

I know the leaflet and info makes it sound like a horrible drug but its sometimes really ok and other times not so bad. It can also so help and a good that they are treating you aggressively as well cus the sooner they do that the less chance of joint damage.

I really hope that your feeling a bit better about it all today but this lot will be here to hep you along the way so please keep in touch. Nice to meet you and fingers crossed. Cris x

Colin1

Hello Lozz well i'm your friendly face at the moment. What can I say, I can’t answer all your questions but ill have a go. RA is difficult to cope with to say the least and there are people out there who don’t really understand how it effects us.
So sorry about the way your feeling as you can guess it also plays with your mind one day feeling not to bad the next like your going to die. You have to really strong and careful not to get yourself into a rut or depressed.
The Methotrexate well its not good to be full of medication and some times the meds can make us feel unwell. I have been on Methotrexate for years and I don’t like it but live with it because of the RA When I first started it was like a miracle but alas it only lasted a couple of years but at least I got relief for that period of time. Meds effect us all differently and you will swap and change your meds many times until you find one that works for you. After years my Drug is Rituximab but you still have to take the Methotrexate with it. Just waiting to go in for the day for my next infusion. One thing with the Metotrexate tablets is it can give you an upset tummy and make you feel ill for a day or two Folic acid helps with this but if it gets bad you can ask for Metheotrexate injections and that eases the tummy problems.

Not working for me was a great blow I had to retire with ill health and we did struggle for a while but things have settled now and where ok. Its hard not working especially if you loved your job. I think if you talk to the CAB they can tell you your rights regarding work but I understand where your coming from and your thoughts.
The whole thing is a pain in rump trying to cope with your illness and having all that worry doesn’t help and RA just loves stress. Wish I could wave a magic wand for you and solve all your problems. One thing is your young and the earlier you catch RA the better it can be treated and people do go into remission Please feel free to get back to me if there is anything you want to ask.
You take care and dare I say try and keep your chin up
X
Colin

lozzC

Thanks guys

I am feeling a little bit better today.... It's just a massive thing. 6 months ago I was told it was just a virus and it would go away it's self and all of a sudden I am given different leaflets and everything's moving quick, which I guess is a good thing.
But my pain medication isn't good... My consultant seemed surprised that I am in still in so much pain on steroids, but reading on here it seems other people have not had help from steroids?! I have been taking co-codamol and ibrufine too... but tbh... they don't really help that much.
My GP is starting me on the Mxt this week so I will ask him if he can give me anything else, especially as my steroid dose is going down dramatically.

I have 4 week's until the summer holidays and my contract at this school is over so I don't have long to grin and bare it... I am dreading sports day though haha!
Applying for jobs is tough.... I don't mind telling people about my RA, tbh I find it less embarrassing than struggling to do things and then having to ask for help without people knowing. However I don't want it to go against me when applying for jobs.... and I haven't got a clue what to do with the box that says 'Do you consider yourself to have a disability'.... What do you write!? 'sometimes' haha.

Thank you so much for just replying! Its nice to know other people are out there!!! My partner is very supportive, he's fab! Even learnt to cook in the last few months! hehe. But I think its as much as a shock for him as it is with me! We have been talking about our family and our future and now everything just seems up in the air!

Everything happens for a reason ey.... xx

dibdab

Hi Lozz,

I'm really feeling for you. Like you I teach (Y1) and struggle with the demands of the job, my consultant just says I have to learn to pace myself better- sadly no one seems to have told the powers that be in education about pacing it though!!!!!
My head is wonderfully supportive, after seeing the OT school provided a new chair, voice activated software for my computer, and changed my early morning playground duty to give me chance to "get going" in the morning. For me the biggest change has been working part time- it takes a while to get used to having less income, but it's so worthwhile in terms of the fatigue if you can work out a way to do it. Also I've been open with colleagues about some of the things I struggle with and most are keen to help where they can-things like carrying heavy stuff, opening stiff tops and lids, moving furniture around etc, and even the children help-they know I have "poorly bones" and offer to fasten my coat buttons if I'm wearing my splints for work. But I certainly had a struggle at 1st swallowing my pride enough to ask for and accept help.

As the meds begin to work things should get better for you, so hang in there and don't be afraid of letting folks know about your RA, just let them know that it doesn't make you unable to do the job, there are simple changes that can make it easier and cost very little. You have such a lot to give to the next generation-hang in there. And keep talking to people who understand- it makes a huge difference,

Deb x

tillytop

Hello from me too LozzC.

I am so sorry about your RA diagnosis but you have come to the right place for help and support because we really do understand.

As the others have said, when you are first given a diagnosis of RA it really can send you into a flat spin. But it sounds as if your consultant is on the ball and is getting you started on meds quickly which can only be a good thing. I am sorry you haven't had much help from the steroids (presumably these are oral prednisolone?). Certainly the steroid injections don't seem to work for everyone but I have always found that the pills really help me - at the right dose (which is often more than the consultant thinks :roll:). I don't know what dose you have been taking but it may just be that because you have a lot of inflammation going on at the moment the dose you are taking is just not "man enough for the job". I think you are absolutely right to discuss it with your GP though to see what he can suggest in terms of pain meds to try to tide you over until the meth gets into your system and you know if/how well it is going to work for you. The other things is that a change of anti-inflammatories might help you. Like with most of these meds, they don't all work the same for everybody and you may need to try several to find out which works best for you.

Re your job and applying for new jobs, I think that honesty really is the best policy because otherwise it might just "come back and bite you" at a later date which will just add to your stress. In terms of the "do you have a disability" questions, I would be inclined to put an asterisk against that question and write a short explanatory paragraph somewhere, saying that you have been newly diagnosed with RA, and are waiting to start treatment. That way you have your bases covered so to speak and, if they want to ask you further questions they can do so. When I was diagnosed, I was two weeks into a new job and, although I knew that diagnosis was likely, I hadn't told the new employer on the medical forms etc because I thought that would ruin my chances of getting the job.
I had to tell them though very quickly because I was signed off work for a good few weeks after that and luckily they were understanding. But I spent the next 12 years of employment with the company worrying that they would find out I hadn't been up front with them to start with!

Good luck with the meth and please do keep posting to let us know how you are doing.

Thinking of you.

Love Tillyxxx

frogmorton

Hi lozz

it is lovely to meet you, but so sorry about your diagnosis...

have you thought about taking any advice from the teacher's union?? Just a thought as they may have some advice with regards to your rights, job sharing etc.

In some respects the timing is good because in 4 weeks time you can concentrate on your health and getting well. Any side effects from the MTX should have settled/ been dealt with.

Of course a diagnosis like this is NEVER good timing really is it? This place really helped me get my head round things....my main advice is to read up as much as you can (reliable stuff only - like on A/C), and keep talking as much as you can. Like to US lot

There are lots of kids who do need home tutoring (my youngest included) and there is at least one home tutor on this site. Advantage being she can usually work around her own health needs.

Please do ask anything you want - the people on here are lovely and we will help you all we can

Love

Toni xxx