what do i do now - crossroads of life??

psyart

Hi – 2nd post for today!!! This may take a while so please bear with me!! Recap – have been on methx for about 16 months , had to have it reduced from 20mls down to 15mls and then 10mls at April! This is because I cant tolerate it – unfortunately the side effects just got to me!! The consultant in June said that no point staying on methx if its not doing its job and due to side effects! He said to try Gabapentin – attach the PA from another angle!! So I have been slowly increasing the Gabapentin and then 3 weeks ago I stopped the methx injections! I had another bad weekend with it and the consultant said to stop when I was ready!! I have slowly started to feel better in myself, the fatigue has got better, I don’t feel sicky or yucky??!!! BUT – the pain has started to come back!! With vengeance!! I am still on co-codomol at least 3 times a day – sometimes need it more than 4 times a day!!!! The Gabapentin is taking the edge off the pain but wears off!! I am on 2 tablets 3 times a day – 1800mls. When I do some work I then find my body complains big time!! So this is where I could do with some advice!!! I have been let down by the school I was working for – 3 days a week – and due to PA being in my hands and elbows, as well as other places!! I am wondering now what to do???? What job can I do?? Who is going to take me on if my hands are not good?? I feel I am at a major crossroads in my life!! I am seriously considering registering disabled? am I doing the right thing?? The other thing I have to consider is that I have just completed my 1st year of a Fd in teaching and learning!! I started this due to my job in the school – I was advised to do this but now I am no longer working at the school do I need to carry on?? As some of you may remember I was not very good from February to April time and realised I had depression! This has had an effect on my uni work – I went from getting a C+ down to D- and then a D for a research project! This has really knocked me for six – I feel I have failed in the work I did and am very down about it!! This has started me thinking about whether to carry on?? I hate failing and I know I really struggled with the last 2 assignments! Do I put myself through another year if I don’t need the qualification anymore?? I am qualified as an adult teacher so this was just to top it up!! I am really having doubts about whether to carry on!!!!
Is it time to change my whole life?? Someone said that its time to think about what my health is doing to me and its not getting any better!! Maybe the things I am doing are making things worse?? Please, please can you give me some sensible advice?? My mind is going over and over and just cant think straight anymore!! Sorry its such a long post!!!

Louise xxxx

livinglegend

psyart wrote:

I feel I am at a major crossroads in my life!! I am seriously considering registering disabled? am I doing the right thing??

Now I am no longer working at the school do I need to carry on??
I went from getting a C+ down to D- and then a D for a research project!

Someone said that its time to think about what my health is doing to me and its not getting any better!! Maybe the things I am doing are making things worse?? Please, please can you give me some sensible advice?? My mind is going over and over and just cant think straight anymore!!
Louise xxxx

Everyone has moments in their life when they are unsure about themselves or what to do next, its normal.

Have you googled about being Registered Disabled online? What real benefits would it give you? Write down a list of the pluses and minuses, if there are mainly minuses then don't bother. If you get this out of the way first, then you can concentrate on the other things that are bothering you.

With the general situation regarding employment at the moment, you may be better to continue with the course and things may have improved in a years time. Any qualification can be useful due to a proof of transferable skills. So I think you should continue. If you haven't already, you should have a private talk with your next year tutor about the situation and tell them about your disability problems causing a drop-off in your work. They have to make an allowance for you.

All project marks will fluctuate during a course and a D- to a D is in the right direction. So, don't get too upset about it and really go for the next project with your tutor's help, which should pick up your average grade again. Any course pass at any level is a pass anyway.

Other people may worry about your health, but only you can know your limits and its amazing what disabled people can achieve. Will worrying improve matters? NO. It just makes things worse. So relax and feel more positive about yourself, you can do it.

Joseph 8)

valval

you need to try to stop stressing if you only have one more year left it might be worth finnishing as it will give you more scope in job hunting as and when you get meds that work for you but what ever you do it is your decision and only you know how you feel at the moment good luck in what you decide have you talked to the people running your course there might be ways they can help you val

dreamdaisy

I think Joseph has given you sensible advice regarding continuing your course: qualifications are always good things to have. I too am a teacher, and I have found that the PA has had a great impact on my life. I've been running my own (very small!) business since 1995, offering private tuition for dyslexics. I am fortunate in that being self-employed I can determine my workload to suit me, and that workload has lessened year by year as the arthritis develops. I am determined to keep going tho - it takes me out of myself, I have to think about the needs of others and it gives me something to do.

I take naproxen, sulphasalazine, humira and methotrexate for the PA, and oral steroids to give me a boost. I also have omeprazole to protect my stomach and and a once a week dose of alendronic acid to avoid developing osteoporosis. The pain never really goes but you do learn to cope with it: I'm now in my 14th year of PA, but diagnosed for only the past 3.5 years. I have co-codamol 30/500 for every-day use and tramadol for the rough times. You may need a review of your meds because you don't seem to be on very much - I am sure there's more that could be done to help you. Are you claiming DLA yet? Do you have a Blue Badge? Are you using sticks/crutches to get about or are your legs curently un-affected? Full-blown invalidity benefit (or whatever they call it now) is a last resort - and they will keep trying to get you into work, no matter how physically difficult the job may be - if you can remain the mistress of your own destiny so much the better!

Don't rush into any decisions, but do aim to finish your course. Go easy on the punctuation too - it makes your posts hard to read (and probably your course work too if you use it as heavily in that) so you lose the effectiveness of the marks. DD

skezier

Hi Louise,

I am sorry its all so much turmoil for you just now. Its like that sometimes even without a long term condition.

I agree with the others over trying to finish your course if you can. Job prospects down here are bad anyway so the more you have in your favour the better. Its easy to become despondent especially when your head is messed up a bit but keeping your brain active can really help to keep you too busy to sit and dwell.

I used to be registered disabled and let it go when it ran out so can't advise you on that one. I think you have to do what is best for you and only you know what that would be. Sometimes a list of fors and against help to see if its a good plan or not. For me its the idea of having to fight, I am not so good at that bit

I hope things get easier for you and I also wonder if they might change the gabapentin for the pregabalin? Its far better and has less resistance as its the next generation. Might be worth asking? I do hope things get easier for you. Cris x

dorcas

Hello Louise

...don't panic :!: and please take things one step at a time. Work out for yourself what the issues are..a list can be helpful. Decide which issue requires action now and what decisions can be postponed until you feel more in control.

If the PA is what's causing you the greatest problem and the condition is 'flaring' again and the pain meds aren't working .. then contact your rheummy dept . :!: It does sound as though you have been left to 'manage' your condition and the changeover in meds without the necessary support..so speak with the rheummy and let them know what is/ isn't working for you.

I'm not sure I follow what you meant by your work 'letting you down'...sorry if I've missed what has happened to you there. :? employers have a duty to support employees who have a long term disabling condition and to look at aids and adaptations within the workplace.

I agree with the others that you should inform your uni tutor about your health issues..they can support you and negotiate with the lecturers for additional time for submission of assessments that could help you to finish the course.

If you haven't done so already then applying for DLA seems a logical thing to do. ..CAB can help with completion of the forms

Louise... you are not alone..we are here and will support you.

(((hugs)))
Iris xx

trisher

Hi Louise

I cannot add more that what everyone has said.

I just wanted to offer you some support. Sending some ((((())) for you as well.

Whatever you decide to do just weigh up the fors and the against first.

I do hope you feel a little better soon

Love Trish xxxx

speedalong

Hi Louise - lots of great advice from all above.

So just adding my support.

Speedy

catlady

And from me too. :P Take heart, you will get there, all the advice you've got on here is good and we all feel for you. Jenny

tillytop

Hi Louise.
So sorry that everything seems to be overwhelming you at the moment. I have been there too so I do understand.

Reading through your post, the thing that strikes me is that, if your PA could be under even slightly better control, everything else might seem more manageable. Your consultant doesn’t seem to be doing right by you in the sense that he has not discussed any other possible drug options with you – and, whilst the Gabapentin and Co-Codamol might give you some relief, they are not tackling the underlying inflammation.

Although I have RA, not PA, my understanding is that many of the same drugs are used for both PA and RA. I too had to stop metho because I couldn’t cope with the side effects but there really are lots of other options out there. For example since stopping the metho I have taken (not all at once!) Leflunomide, Cyclosporin, Azothiaprine, Hydroxychloroquine, Injectable Gold, Infliximab and Humira, along with Prednisolone and Sulphasalazine. Some have worked well, others haven’t but, with the exception of the Humira, none of them, for me, had side effects as bad as the Metho. So there are potentially other options open to you.

I would really, strongly encourage you, to try to go back to the consultant at the earliest opportunity to see if you can get some medication which suits you better than the metho. I think that your health has to be your number one priority at the moment and stressing about the other things is just going to overwhelm you. Presumably you have a break from school/study now over the summer hols? If so, maybe you can take this opportunity to move forward on the drug front, and to make a start on getting your PA under better control. You will then be in a far better position to make the kind of decisions about your future which, at the moment seem insurmountable.

I know from experience that it’s not easy to think logically when you are feeling so bad but, if you can just take one step at a time and try not to think about the bigger decisions at the moment you might find things a bit easier to cope with. (easier said than done, I know).

Please do keep posting, we’re here to listen and support you as best we can.

Thinking of you.
Love Tilly xx

barbara12

Hi Louise
You have been given really good advice. just to say we are always here when you want to talk things over.
I really hope things work out for the best.
Let us know how things go.
Love
Barbara xx

psyart

a big thank you to the replies!! what has been said does make sense!!
these things have been going through my mind since the school changed their minds about keeping me on at the school but because i am under supply staff they have the right to stop my hours if they want to! DD - sorry about the punctuation but i wrote it in word then cut and pasted it!
I have looked on Direct gov site and have thought about seeing a Disabled Advisor? in the job center. I just needed to mull it over with you guys! I am not happy to give in on my course but do need a placement within a childcare setting to complete the course. I have spoken to my tutor and he feels i should see what happens in September. what ever i decide to do then i wont rush into it and will probably ask for advice again!!
talking to the rhumny nurse makes sense - i saw my doctor a couple weeks ago but wasnt sure how to explain it to him then!!

Again a big thank you from the heart!! I knew you lot would be straight with me!! Thanks for the suppor!

Louise xx

marion1952

Hi Louise

I can't add anything to the excellent advice others have given you, so just to offer you my support also and to say keep posting..

all the best

Marion

dorcas

Hi Louise

sounds as though you have 'hatched' a plan...

go with it girl and let us know how you get on. We are always here to help if we can so keep posting...you're not alone. x

When you get your next rheummy appt let us know and we'll all go with you in your pockets!

Iris xx

psyart

Iris - i will make sure I have big pockets for you all to come with me!

The reason I write on this forum is because I know that people understand and that what seems silly to other makes sense to people on here!!! And I know that someone will help me get through the clouds of confussion that 'arthur' can give us.
Reading the replies makes me realizing that I must not give in to 'arthur' and this is just another blip I have to climb over!

thank you again, everyone for the support and advice. xx

Louise xx

dreamdaisy

People who don't have what we have have no bl***y idea what we face, the hurdles we have to overcome. To them, arthritis is something their granny has. She occasionally uses a stick and doesn't grumble, but of course they forget that they might see granny only once in a blue moon so they don't get the full picture. Grrrrrrrrrrr.

Arthritis is a debilitating condition that occsaionlly allows you some up-times when things improve, but more often than not causes down-times when it decides to get busy. It does restrict our lives, it is in-convenient and it is demoralising. We need at least double the emotional and physical reserves of healthy people, and we learn to develop those reserves as we cope. One thing I have learned is to do one thing at a time. So - in no particular order, finish your course and get your meds sorted. Then you may find that you have a new lease of life, that things are clearer, and decisions can be made. I wish you well psyart - let us know what happens! DD

tillytop

tillytop wrote:

Hi Louise.

For example since stopping the metho I have taken (not all at once!) Leflunomide, Cyclosporin, Azothiaprine, Hydroxychloroquine, Injectable Gold, Infliximab and Humira, along with Prednisolone and Sulphasalazine. Some have worked well, others haven’t but, with the exception of the Humira and the Leflunomide (Arava), none of them, for me, had side effects as bad as the Metho. So there are potentially other options open to you.

Hi Louise

Just made amendment to drug list above.

Are things feeling any clearer for you today?


Thinking of you.

Tilly xx

angel1

The last time we "talked" Louise was regarding your bout of depression, and the dreadful effect it was having on your life.

For anyone suffering with Arthur, depression is always waiting in the wings. Sadly, this can add to the confusion of everyday living. When making decisions about what we feel might improve life, it is important not to chuck the baby out with the bath water. You know, when we are having "I can`t be bothered any more" days. I feel you may have reached this point regarding your work, that it isn`t good for you any more. I urge you to re-think this. Try to focus outside the depression box, in a more general and long term way. Not easy, but do-able!

As always, I wish you all the love and luck in the world........Ange.

psyart

Hi to you all.

Joseph - thank you for your advice - it does make sense to me. I think what i am worried about is supporting myself - if that makes sense? the OH does work but I want to be independant and though this would give me certain indepandance even though I would be relying on the government!
Again with the studying - i hate failing and am afraid of not coping! But everyones words of wisdom has helped me think through the fog!
The words of support has helped me immensly and thanks and hugs to all of you!
DD - your last post on here says it all - when i have to make choices in my life 'arthur' makes it difficult for me and as i normally am able to sort myself out but now i cant then i find this difficult. does that make sense? along with the demoralising aspects then i do struggle and get into a fog! today has been a bad day - pain wise so went to the doctors and am now on tramadol as well as co-codomel - tonight i am nearly pain free!! well for about an hour! will contact the rhumny nurse and talk to her as not due to see consultant till october.
I have also applied for a job as an advisor with a charity that helps disabled people find training, jobs, etc. completly differnt to teaching so maybe a new road!

(((((hugs))))))

louise xx[/code]

psyart

angel1 wrote:

The last time we "talked" Louise was regarding your bout of depression, and the dreadful effect it was having on your life.

For anyone suffering with Arthur, depression is always waiting in the wings. Sadly, this can add to the confusion of everyday living. When making decisions about what we feel might improve life, it is important not to chuck the baby out with the bath water. You know, when we are having "I can`t be bothered any more" days. I feel you may have reached this point regarding your work, that it isn`t good for you any more. I urge you to re-think this. Try to focus outside the depression box, in a more general and long term way. Not easy, but do-able!

As always, I wish you all the love and luck in the world........Ange.

hi and thanks! i am on something for depresion and had started to feel like i was getting back on track. the job i had with the school was ideal for me in everyway, health way and for my course, but i do feel let down by the school - no one from the new team has even bothered to contact me to say what they are doing! this i feel will mean big changes in some way. but as i said in the post above i have applied for a job in a new direction! if i hear anything i will let you know and tell you more!

(((((hugs)))))
Louise xx

psyart

tillytop wrote:

tillytop wrote:

Hi Louise.

For example since stopping the metho I have taken (not all at once!) Leflunomide, Cyclosporin, Azothiaprine, Hydroxychloroquine, Injectable Gold, Infliximab and Humira, along with Prednisolone and Sulphasalazine. Some have worked well, others haven’t but, with the exception of the Humira and the Leflunomide (Arava), none of them, for me, had side effects as bad as the Metho. So there are potentially other options open to you.

Hi Louise

Just made amendment to drug list above.

Are things feeling any clearer for you today?


Thinking of you.

Tilly xx

Hi - reading the posts has made sense to me - and it has helped me. i have had a bad day with pain - so have been to the doctors and got tramadol as well. so hoping this will also help.

will let you know of any changes.

((((hugs)))))

louise xx

mummyb

Hi Louise, just wanted to add my best wishes to those above. You are in such a difficult place right now, but you know, this is a moment in time and you won't always feel this way. You never know the course may open some new doors for you, leading to new opportunities. Keep your chin up babe and don't let the bu***rs get you down. You have a lot of friends on here and a lot of people willing you on and supporting you. Love and hugs ((((()))) Brenda xxxxx

dorcas

Hi Louise

hope the Tramadol has helped you get a good night's rest.
thinking of you and sending you positive vibes.

Iris xxx

dreamdaisy

Pain killers are not miracle workers - they take the edge off for a couple of hours but that can be enough to make a difference and allow one to get on with things a little better. It's good to hear you sounding more positive psyart, mind over matter does play a major part with what we all face. The realities are harsh, but if the will to overcome is there it does help. DD