I am still feeling exhausted and tearful today and very short tempered. I have come to the conclusion that I need to cut down my hours . I only work three days a week as it is , I am going to try to cut down to two? The only dilemma I have is money. Going down to two will be a big drop,but my body says I must.
Oh decisions decisions. I only hope that my new meds. Will work and then maybe I can work more.
Have a nice weekend . Gentle hugs to all that need them.
Jane x
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Heathersmum69
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I was in a similar situation, financial considerations a major issue. There is no clear answer to "how much is enough", especially when we have diseases such as what we have.
I crossed my bridge without having a clear answer to this conundrum. But I can say that my body appreciates the reprieve from the work stress
Hello I've battled on for 13 years working full time since I got RA in that time I've had many treatments but now nothing really works and my body and mind have said that's enough so house is up for sale and looking at medical retirement, at 51 and a young family not an easy thing to do but please don't push yourself too much it's not worth it ! I would like to say that not many people with RA talk about how it effects your head do battle with pain, not sleeping etc it's a job on its own! Take care and change things to improve your quality of life.
I know exactly how you feel, it can be so hard to know what to do. I was diagnosed ar 30, I had a 1yr old n 3yr old and was due to return from maternity leave. Like you I only worked 3 days a week but it was just too much. I was so short with the children, shouting all the time and just so exhausted all the time no matter how much I rested at the weekends.
I think I was so short tempered and teary because of the frustration and anger iwas feeling towards the RA.
My meds didn't really work that well at the time and I even contemplated giving up my career altogether.
After a really long chat with mu husband we knew.something had to change. My mum kindly gave me £30 a month to have a cleaner every other week, I got an ironing lady and dropped to 2 days a week. I went to a counsellor for about 3-4months to help me get my emotional state in line (took a long while to get used to having to have a cleaner let alone RA)
It was the best thing I ever did, slowly over about 3months my fatigue eased, my injections began to work and life became more balanced. We had to give ul a few bits here and there due to my reduced salary but the gains in my health and more importantly emotional health fare outweigh giving up the odd takeaway etc here and there.
Now I'm 3yrs on, I'm not "normal and symptom free " but life is even, I'm much happier, I can be the mum and wife I want to be (well most the time) without snapping at everyone and I really feel in control again.
I know its hard and there probably isn't a "right" thing to do, but taking control and making some kind of change will cause some kind of reaction and hopefully for the Better
Hi Jane, I know just how you feel! I reduced my hours last summer and it helped at first, however I am now struggling again. I am having problems with meds, now having to stop Cimzia (due to high LFT's ) which has kept me reasonably well for the last year. I am so tired and miserable all the time and the stress of my job definitely makes my RA worse as when I am on leave or off sick I feel so much better! Our financial situation is not great and I really don't know how we can afford to lose more money but I am seriously thinking about medical retirement if I can get it, ( I am now approaching 50) , if not I may just have to resign. It's certainly not an easy decision to make but I just keep coming back to the same thought ' my health is more important than money'. My husband and family are constantly telling me to give up! Hopefully I will make a decision soon one way or another, hope you do to!
Hi, my first post here but I too can relate to the work/life/stress balance. I was diagnosed with RA 18 months ago and the methotrexate is working pretty well. I took early retirement at 51 and have moved to the seaside. Although we now run a small bed and breakfast we can work to suit ourselves and if I need to rest I can. The lifestyle change has done wonders for myself and my husband. Basically I'm just saying you have to do what you feel is right for you and your family but a lot of us have gone through the same process to be able to live with this disease.
Sometimes you need to have some time completely off work and recharge your batteries and get more sorted out. If you are able to do this, you may find that you can get things under control and be able to continue without dropping down you work hours permanently.
This sounds like me. I've just dropped from 28hrs to 18.5hrs as I have been struggling. I've been on long term sickness & been back at work 4 weeks. I've tried doing my 28hrs over 5 days but came to the concert that wasn't working for me. Luckily the organisation has just gone through a restructure so I had the opportunity to drop hours. I'm still struggling with 3 days. I love my job & want to continue but I'm unsure how long I can carry on.
Anaemia is quite common with RA due to the chronic inflammation and that leaves one with little energy. Getting on top of the RA sorts it out, by biological treatment or whatever it takes. No easy answer apart from stopping the inflammation I'm afraid.
I know this must be so hard for you! I have to admit, I'm very thankful that I was able to retire before I had to start the struggle with RA. I don't think I could do it now, especially since I was a secretary and had to type all the time. My poor hands just couldn't do it now. I have such empathy and compassion for those of you that still are working and trying to deal with this horrible disease. Gentle hugs to all!
Thank you to everyone who has replied to my post "Feeling exhausted" today I am still not right. I have been signed off work for the time being. This will give me some time to think about my options.
Hugs
Jane xx
Dear Jane
So sorry to hear you are struggling so much . You may find the NRAS Booklet "I want to work"...useful when discussing with your employer changes in your working hours etc.
I am not sure what work you do but is it possible to work one day from home perhaps or change the starting and finishing hours perhaps so you can do the same number of hours over the week but spread so that you don't have early morning starts etc. There are many such suggestions in the booklet which we can send to you if you like. just contact 0845 458 3969 or email enquiries@nras.org.uk or order online at nras.org.uk
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