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Rank: Newbie
Groups: Registered
Joined: 2/14/2010
Posts: 7
Location: Westwickhan
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Hi, I feel stupid putting this on here but I was awarded Humira November 2010 along side my metx and cox-2, I am feeling quite good at the moment but experience symptoms of RA still but choose to ignor them as much as possible... burning shoulders and sore feet just normal part of life now for all of us right? or wrong? How well should I be? nobody tells you because I think nobody really knows and everyone is individual!!!!
Anyway my Question is this how hard can I expect to push myself now my flares have lessoned in serverity even tho I do experiance what I think are signifigant symptoms that make things harder for me to cope with physical tasks than other people who do not have RA.
Should I go all out to work as many hours as I can ???? or would this be irresponsable as RA is still in me just slowed down some what???
I am finding things really hard as My long term relationship/marriage came to a end Jan 2010 and hubby was main wage earner. He has really good job that pays very well in the police he is almost at inspector level! verses me part time shop work!!!!!
I have been left to sell marrital home as he is with someone else
He is not paying a penny to me or the house (we didnt have any children )
I have had a very bad time, years of trying to adopt then discovering husbands affaire, now going through divorce, selling marrital home ... unsure how much of the equity will be awarded to me!
I just dont know how to plan..... its me at 35 on my own again and I am ok with that, self estem/confidence really low but happy he has gone...unhappy about fending for myself, feeling cheated slightly no children ( husband low s count ) and now 6 years into a chronic illness...... How do I know how much responsability to take on with regards going to work?????
Its taken the whole of the last 6 years to carve out my current working pattern one day on one day off to rest 16.5 hours weekly, I dont want to mess with this as its hard to be taken seriously when u suffer with RA other work employees think your making it up you can tell.
I plan to try to start my own 'paint your own pottery business after the divorce is finalized and untill then I have put myself on a 2 day course to teach me how to start up the business ( gives me something else to focus on )
How much is too much???? If I work more I wont have energy to deal with day to day tasks or have any energy left to put into this pottery thing!!!!
Has anyone else found themselves in similar situation??? on a good drug that helps their symptoms significantly but concerns surrounding the issues I have voiced?
Many thanks Rebecca
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Dear Rebecca
Please don't feel stupid- that's what we're here for!
My heart really goes out to you, everything you have had to go through on top of having RA.
I can' offer much advice Im afraid, except to say that I work 4 days a week and know I can't manage any more. At the moment I'm havng a reasonably 'good' phase although I still get symptoms. During these times I always think I'll be ok to do more and then suffer for it! I didn't like having to cut my hours and it's very tough to stop myself from taking on more even though I know I shouldn't. I'm still strugglng to accept that I can't do what I used to and the urge to fight it is very strong. I am in two minds whether to cut back further, but I keep thinking 'what happens if I feel better later and want to do more- but it's too late?' But the truth is, will I feel better? I'm trying hard to accept the limitations. It is so frustrating.
Sadly, work colleagues often don't understand- we all know the 'you don't look ill' comments and I've been on the receiving end of unpleasantness at times.
You say that you don't want to mess with your current work pattern and if you work more you won't have the energy... maybe you've answered your own questions here?
It sounds like you are really keen to do the pottery and as you say, it gives you something else to focus on so maybe it wouldn't be a good idea to jeopardise this.
I'm really into card making and would love to pursue it but lack the courage to take it further- I'm still stuck in my comfort zone. and I really admire you for wanting to try someting new.
There is no easy answer. Have you thought about ringing the NRAS helpline for advice and a chat?
Take care- keep us posted on what happens.
Maria x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Would it be good idea to start to keep an RA diary Rebecca? Put things in such as what you did that day and how you felt for the rest of the week etc? That may make it easier to plan just how much you CAN do before RA reminds you it's there. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Rebecca,
So sorry to hear of your marriage break up but I admire you for coping so well and trying to plan your future.
Julie's idea of a diary is good, you could then see day to day how you cope with things.
Also, Maria's idea of ringing the NRAS helpline is good, you might get to speak to someone who has been in a similar situation.
Good luck with it all.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Rebecca - yes, please, please ring the NRAS helpline for some support. Also Julie's idea of a diary is good
I am so sorry you are having such a stressful time. I've also been through a marriage breakup, but it was before I was diagnosed with RA. My heart goes out to you.
Love Jeanxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Rebecca
Whatever you post on this forum is not silly. Every subject is important and it is good to share your problems with people who have an understanding of what you are going through.
I am sorry that you have been through such a painful time with your marriage breakup and like everyone else has suggested you do need to talk to someone about this and your RA and the NRAS helpline is a good place to start.
Working and RA is a difficult subject. We are born to work and it goes against the grain when we are not able to when we are years away from retirement. I work full time but only three days in the office and then work two days at home so that I can rest. I do not think I would be able to go back to going out to work again for a full five days and I know without doubt that my health would deteriorate if I pushed it too far. I have 19 years left before I can retire on full pension (not that I am counting). It is a very fine balance.
I do think that giving yourself a goal with your pottery business is brilliant. Like Maria I love making cards and have done so for a couple of years. I gave them to people at work as Birthday cards etc and then they asked me if I would be willing to make some christmas cards for them to buy which I was happy to do. My Sister also runs a pub and she has offered to sell some. I don't have time to do masses of them but all I want to do is get some money back so that I can carry on making them. I am not in it for the profit. It is my only hobby and I can lose myself in making the cards and forget about my dratted RA. I firmly believe that my hobby and working has kept me sane and not allowed me to dwell too much. As our grannies say "idle hands makes work for the devil".
Take care
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hey rebecca!
So good to hear from you on here again, but my goodness girl have you been through it!
I have also been through a very sudden end to my first marriage. All the way through being trapped into believing that he was sticking with me, with this crappy disease, and actually on reflection I was sticking with him!
funnily like you we had been through the adoption process, but for us, the marriage ended 3 mths into placement and I ended up as a single mum.
Literally overnight.
I moved in with my parents and we promised together, as a family to bring up these children and that is what we have done.
The grief for the loss of the marriage was important to work through and recognise.
Ironically at that time in my life, I was well RA wise on enbrel
I took weekly counselling for 6 mths and did a lot of seemingly strange but hugely helpful things like reading a letter that I never would send saying all the things I really wanted to but couldnt to a lit candle and then blew it out. That was a POWERFUL thing to do.
I found to my surprise that the local parish church a source of non judgemental and kindest support and they helped me enormously.
Over time the house was sold and monies and divorce settled and I started to get out more and see people, I was 27. wORking part time at the school teaching.
Had some good laughs with some friends including one speed dating night to be remembered- plus we did have a great glastonbury in the disabled campers zone...!
My sister is single with a chronic illness and cant afford not to work in all honesty and so she sold up a couple of yrs ago and now rents, it works out much better for her in case she gets so poorly again she cannot work.
I am now not able to teach (got unreliable because of being unwell so often) and so I have done a couple of things with life like get married and have a miracle baby and also done some OU and courses in working with traumatised children.
I now am doing a course in social enterprise through the Hampshire school of social enterprise, this is where you deploy a business mindset to a charitable heart. Its one day a wk on the course and then the rest of the time is your own to work or do your projects.
Interesting concept eh?
There are several artists on the course with me this yr. I have been wanting to read a bk called "the inner artist" as art holds such a constant draw for me. I once had ambitions to become an artist but never really got there!
I do not have well controlled disease and have a hell of a lot going on family wise, adoption is never straight forward and is parenting plus and right now its a real challenge! it really is being a specialist parent to a child who hurts.
Your life is SO not over! there is so much life to lead. Listen to your body and stop when the pain gets too much and keep some "spoons" in the bank. (www.butyoudontlooksick.com the spoon theory)
Come and find us on Facebook I am Jenni B-l on there, look on the NRAS page you will find me.
Keep posting.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Rebecca. It is so easy to overdo it when you feel good. Don't make that mistake. Ask yourself this question "Is it better to do everything in one day and feel awful for the next however many weeks or to do a bit one day and be able to do a bit the day and the day after that etc?" Always pace yourself. It pays!
Sheila x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Good point sheila! Have a look for the "traffic light" system on the search the forum option!
how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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Hi Rebecca, sorry to hear you have been going through such a bad time but pleased for you that you are managing to look forward.
All the best for the future.
Bevxx
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Rank: Newbie
Groups: Registered
Joined: 2/14/2010
Posts: 7
Location: Westwickhan
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Thank u every one all the replys r very helpful. I will have a look at the traffic light thing! Again thank you so so much. Its so hard to be able to provid financially for myself whilst having this illness...  . Even when in reciept of 'DLA' there is a 'fear' that it will be took away!!! you fight so hard to get it...if your luckier enough to get some decent medication and your illness does in fact improve then your fearful you look like your lying!!! even tho the illness is still very much there just dampened down so doesnt change your work capacity greatly RIGHT?  I will do my pottery course and I will start doing my mobile paint u'r own and I will throw every thing at it.....just as soon as the house is sold and the divorce has been completed I will begin my new dream, that way when I have the energy I can fit the work around how I feel hopefully. I will keep you all posted.  Lots of love Rebecca x
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