This is a question I get asked a fair bit these days. As the months go by and my son gets nearer and nearer starting 'big school' I get told I won't know what to do all day. Will I be going back to work? I'm sure most 'normal' mum's consider this as a completely viable option for them, after all they won't be needed at home so much anymore. But all I can think of are quiet calm days to myself to catch up on sleep, rest, housework, emails, blogs, the shopping (in peace) and just having some time to myself without feeling guilty for sticking the kids in front of Cbeebies and putting my feet up. After all it's been years since I've been properly on my own, do I not deserve it, just for a little bit...?
...and as I live in the North West I answered it and have been asked to do an interview. This essentailly is the purpose of the project:
"People with chronic illness are at risk of losing their employment if their condition prevents them keeping up with the pace of work, fulfilling their responsibilities or if their workplace becomes physically accessible for them. This study aims to explore precisely why and how people with chronic illness leave employment, what factors enable them to return to work, and how some people with chronic illness are able to remain employed."
I don't quite fit the criteria as I had given up working about 4 months before my diagnosis but they seem interested to talk to me about the possiblilty of my return to work...
But I am not convinced that I want to return to work. I know I would struggle to do what I am trained to do so there are more than a fews niggles there. The only motivator would be a slight improvement for us financially but I'm not sure I value a bit more money coming in over my own health? And then there is the fact that I don't drive and I'm restricted to school hours. I'd find travelling on public transport tiring and expensive (extortionate up here in fact). I'd find it stressful getting three of us up, ready and out on time just so I could go to work with other peoples' children all day...leaving me too exhausted to bother with my own two when I got home. That's even before considering the effects of RA!!
Much more for me to consider than just filling my 'free time'.
So fellow bloggers, I thought I'd ask you if you have anything you'd like me to put forward to them about this issue? I know that a few of you struggle to do your jobs and some have been forced to give it up completely because of your RA. How do those of you who are working, manage? How do your employers cater for your ever changing needs? Any insight would be much appreciated seeing as I've not had a 'proper job' for almost 5 years
Looking forward to your comments or messages...
Jo.
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emandedmum
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I don't know if this is of any help or use but.... I am self employed in farming. We have 6000 free range hens, about 15 suckler cows and 150 ewes we use for lambing. I am finding it very difficult a) to maintain a regular input to the daily chores and b) convince my partner I cannot carry on...
I know that if I had to employ someone like me, I would not have the financial support to say to that person, it's ok if you can't come in one day because of the RA, so I don't know how people can carry on in their jobs if they are like me. Which is that some days I can get up and get to work without too much problem, but some days I feel awful, I drag myself out of bed, it can take about 2 and a half hours before I make it to the chicken house. It's almost impossible to say I can't work, because some days, or rather some part of the day I am fine. Afternoon is the best time for me at the moment, but by 8 in the evening I have had enough and have to got to bed. Yet the other night I was still up at 10.20 and felt fine! Some days my poor old David comes in from lam bing or whatever cold and hungry and I have gone to bed! That makes me feel even worse and us women like to nurture but sometimes I just can't be a***d to cook!
It's not straight forward at all with RA. It might be in the future that the meds will let me do more, who knows?
In the words of my worldly wise father in law "if I was you", let you body dictate what you do. If you are able to say the you have a regular cycle of peaks and troughs you can work around it, but if they vary so much on a daily basis I don't see how you can. Your children might be at school, but you still need lots of energy when they come home. I would have loved to have stayed home with mine but finances dictated otherwise. I think if you are able be there for them they want an mum who has enough time and energy for them, it's one of my biggest regrets. But we are all different. Good Luck x
Julie, thanks for your comments, I really don't know how you do, do it, I certainly couldn't! I hope that the meds will make a differene for you soon, for me it was 3 months or so before I felt a real beneift and it's always much harder through the winter to keep going. And then just when you think you've got it sussed it changes tack...!
I trained to work with children and was employed in various nurseries before, during and after having my two children. My main fear now is that I wouldn't be able to cope with the physical and emotinal demands of the job. Imagine if I stumbled whilst carrying a child or worse...it doesn't bear thinking about really.
I am looking forward to having the energy to invite my children's friends round to play after school or to feel up going to the park and actually joining in or for a hot chocolate treat...things I feel I owe them as I know they do miss out because of me. Don't get me wrong though as much as I am looking forward to some me time I'm sure after a few months of being on my own I might begin to change my mind!? But by then, I might be ready for it...
The youngest of my 3 children is now 19, and I have always job-shared week on, week off. My advice is that you do deserve time to yourself, and if you can afford to not work and are happy at home and have plenty of friends and social activities (aside from mums of your children's friends) do not get a job, because, now I find myself at 48 with RA ' between a rock and a hard place' my health dictates that I should'nt be working at all, but my husband and family are used to the additional income and so am I! Having said that, I love working and having something of my own, getting there, and home are the hardest part. Be aware though things have changed in the last 5 years and there is no understanding of medical conditions in the workplace in the 21st century. most multinational companies etc have attendance management policies and its a 'one for all' rule, with constant reviewing of absences.
In my experience, and looking back I wish I had stayed home day one after I had my first baby, because it might be better to do one job well instead of two jobs half heartedly. There is no real answer, but do whatever you feel like, but don't think there will be any thanks from junior for staying home. Do whatever is best for Jo!
Thanks Gina, I like your advice. I don't think I'll be rushing into anything so no worries there but I do feel guilty that I don't contribute financially. However, it's done us no harm being more careful with our money! And of course, I look at my two children and I feel like I'm doing a proper good job, despite the RA
Hi Jo
I was lucky enough to be a stay at home mum as is my daughter-in-law. I say lucky because I appreciate that for some mothers it is not a matter of choice.
Those years with my boys were just great, a once in a lifetime never to be repeated experience. I am sure my boys and my granddaughters have benefited from the experience too..
When your boy goes to 'big school' you won't be free from 9-3pm you will simply be under less pressure to do all the housework, shopping wifey,mummy, housekeeping things that you do now. The bonus will be that you can eat or drink whilst sitting down rather than on the run, and look at a magazine or read a book as you do.
Speaking from experience I would remind you that raising children, running a home and having RA means you already have three full time jobs!!!
My advise would be (if finances allow) stay at home. Put aside an afternoon a week for you. Block the afternoon out in your diary and do not let anything barring family illness make you cancel it.
I wish there was a 'like' button on here, maybe I'll suggest it.
Sue, I agree with you about doing 3 full time jobs - even if I was healthy I think I'd be questioning a return to work so the RA is just an added complication. I just find it interesting that other people think that it would be the first thing I'd want to do! As if I've not got enough going on already....
Hi Jo,
I am currently trying my best to hold down my job and I am struggling like hell, before illness I worked full time 40-60 hours a week no problem. Now I have cut my hours to 4 hours a day 20 hours a week, but am really struggling to make it and am knackered after them 4 hours I only work in admin and my employers have been fab.
However I have had in the past 12 months alone had 96 working days off sick and considering there was only 220 days to work after holidays and weekends then I have only just worked over half off that time due to my flares and fatigue.
I have no kids and struggle to look after myself, I dont know how you all do it and manage to have time for your kids. I am so worried that I may lose this job that I have had for 16 years because at 33 who the hell who employ me with my record of absence in the past two years.
It sounds like you have fairly understanding employers (I know previous employers of mine would not have been so) and you have more than your fair share of things going on - I've read you profile! I think you're doing your upmost in your circumstances and shouldn't be worried about the future - who knows what's going to happen? I've learnt to take things a day/hour/minute at a time as you just don't know how you're going to feel as long as you are honest with your employers I don't think they can ask anything more from you?! You can only ask the same from them, if you're so worried speak to them about how you feel?
I only just have the energy to look after my family at the moment as my RA is getting the better of me again. I am looking foward to some time to myself and won't be ruahing into other things. For instance both my children are back at repsective school and nursery today and after a terrible night I took myself back to bed this morning!! I might just make it through the rest of the day now
in reply to
hi my real name is alison and I KNOW just how you feel I AM trying to work 28.75HRS AND FAILING DISMALLY, I work unfortunately for the
nhs, the very hospital which has given me poor treatmeny with prolonged waits for every thing ,I have had to come off methotrexate and are waiting to try gold!!1, my hospital wont fund decent drugs,
Thanks Jo,
and thanks for the link above I have contacted them about taking part in the survey, if it helps people understand what we go through to work its so worth it.
My rheumatologist did offer to sign me off sick for good a few months ago, but I want to work, to keep me sane on the days I can get washed dressed and make it out of the door, as somedays I have all good intentions but once I am up and washed and dressed I no longer have the energy to work and just feel the need to go back to bed.
I do have days where I'm not up to doing even the simplist of things but I don't really have much choice other than to get on with it! On the mornings/days I'm struggling then my lovely neighbour steps in and takes my daughter to school and quite often by the afternoon I'm up to getting out of the house! I'm no super woman and gave up trying years ago. It's good to have something to keep you going though - if it wasn't for my two children I think I'd have given in to the RA completely. As it is, I'm trying to remain as positive as possible for them - it's not nice for them to see mummy struggling x
I worked for about ten years after diagnosis. At a university as a lecturer/ researcher employed on self-generated research grants and bits of teaching. While people paid lip service to giving me support, it was minimal. I had to remind them to arrange meetings in ground floor rooms to avoid me having to climb several flights of stairs. When we moved into a new building I was offered the wonderful option of a wheelchair lift, - I dont need a wheel chair ! I was asked to head a health and safety working group as we had a student in a wheelchair, this was a subtle way of getting my needs addressed. But I did find that I was being passed over for opportunities. When I said I couldnt attend a conference in California straight after the New Year and a day before teaching started - so I would have had to go straight in to lecture after a 9 hour flight - I was quietly dropped from that research group and missed employment opportunities.
My work did enable me to group activity to suit myself - so I often started at 8.30 (in pain) and finished at 2 - to go home and sleep! I'd then get up and work some more in the evening.
Eventually, I decided to take early retirement at the age of 61. Quite honestly I couldnt have done a better thing!
I wish I'd been able to take a year after diagnosis to sort myself out. But I know t hat I'd never have got back in to the niche I'd battled to create for myself.
Thanks for your reply, I'm glad to hear that you're happy in your retirement!
What a pain that you had to 'fight' to make yourself heard and to find a work balance that suited you and your RA, as well as being unwell! People do tend to be very good and say they understand but even explaining it in depth to some is completely pointless and we just have to get on with life regardless!
Hi, have just this minute joined as i was sat in bed feeling very sorry for myself ! It was very comforting reading about all your situations.I was diagnosed in Oct and put on Hydroxychloroquine tablets, but i had a reaction to them last month so they took me off them and i am now on steriods for 4 weeks but am seeing my consultant on Tuesday, so maybe i will be on something else after my appointment.In the last two months i have had 4 weeks off work due to flare up and fatigue, i work in a secondary school which is stressful and tiring without RA and i am not coping very well, i went in today after a terrible night and had to leave at 11.30am as i was in such pain.Not sure how much longer i can keep trying to work 5 day's and look after family and home.Work has been very supportive but i feel terrible when i can't make it in and others have to cover for me, but i am not sure if i can afford to cut down my hours !
I'm sorry to hear that you're struggling at work and at home, I hope that your appointment went well today and that you got some answers?
My partner is a primary teacher (we met at college but I didn't go into teaching) so I'm well aware of how stressful the profession is before adding in illness!
It sounds like your collegues are understanding and that must be a huge relief to you to know that they can manage without you, although I know it doesn't really make you feel any better about leaving them half way through the day! Maybe once your RA is under better control than you will be in a better frame of mind to manage work - it takes time for things to settle down, the most frustrating part about RA is the waiting around but it's worth it isn't it, if you find something that works for you?
Hi , Had a good appointment with the consultant yesterday, he said i was really run down and that i am to come off the steriods slowly in the next 6 weeks and to go back and see him in two weeks and he is going to put me on Methotrexate. Had two injections in my hips which was really painful and still hurts this morning, but hopefully will get better, and he said i had a cyst behind my knee which is making walking painful.
I am on mtx too, just about to increase to 20mg after 3 yrs at 15mg. It seems to have controlled the RA well and didn't take too long before I noticed the benefit although I did have to have 2 steroid injections to tide me over! Your hips will be sore but hopefully after a few days you'll notice the difference - I had one in my shoulder in Oct and it was fab!
Snow here and blooming freezing - long johns are out again!
I am glad to hear mtx has helped you, hopefully i can get mine under control and get back to work ! Just been to 3 chemist's to get the new dose of steriods as the consultant wanted me to come off them slowly and none of the chemist's had the right combination's, could have done without that as struggling to walk and each one had no parking near them !
Cumbria...we've torrential rain today instead, so walking about in full waterproofs taday, great stuff! Glad you managed to get your med's - hope you had a long hot bath last night to help your poor feet and hips recover?!
Yes had a hot bath, lovely. Hope the rain has stopped now, been very windy here today.
Hope your o.k today ?
Hi Jo, as I am new to this site I have only just read your blogg about working with RA. When I left my job to have my son they were making redundancies were I worked it therefore was better financially to take my redundancy as they said there would still be a chance for me to go back there in the future. Having already had a lot of time off with the RA thought this was the best option, thinking about it now I think they just wanted me out because of the RA but I didn't realize this at the time.
Of course as the RA got so bad I have never been able to return to work, and of course, who would employ me anyway?
I think if you are diagnosed with RA while working its, in my opinion best to hang onto that job as long as you possibly can after all they can't get rid of you because of the RA. But once your out its increasingly difficult to get back into employment because of the RA. No employer will take someone on who is unreliable because of their illness, its so unfair really, where do we go from here.
Hi Mand, you're not forgotten but I know how you feel. I think I'd really struggle to find someone to take me on with my RA to do what I really want and like doing so will, when the time comes, have to find something/anything that I can manage to do whether I really like it or not. My partner keeps telling me to write a book but I'm not feeling too inspired at the moment!!
Hi Jo, writhing a book I too have often thought about.
I know what you mean about feeling inspired it's an effort to do the normal everyday things sometimes.
I did start writing my life story once but didn't get very far just gave up after awhile.
I'm sure you will find something to occupy yourself with job/voluntary work, something else to occupy your mind otherwise the RA takes over your whole life as it did with me.
I attend the hospital 2 or 3 times a week sometimes for one thing and another and it feels like that's all that's in my life at the moment and as been for the last 17yrs. Don't let it take over yours too Jo. On the other hand find that happy medium and don't push yourself too much either.
At the moment the RA is all I can focus on what with this stupid flare and waiting and waiting for other people to sort stuff out so I can then sort my stuff out!!
I'm still relatively new to all this though, sometimes I do forget about it but mostly it's lingering in the background -that's the trouble with being stuck in during these long winter months...you have more time to brood Trying so hard to pick myself up and get on with things, been bsuy today catching up on housey jobs...tidy house, tidy mind and all that!! x
You are so right Mand, i am struggling to work 5 day's at the moment and it is a 45 min journey to drive there which is uncomfortable at the moment due to a large cyst behind my knee and painfull hips, i have had 4 weeks off in the last 3 months, they have been really supportive at work but i know if i tried to find something nearer home it would be impossible at the moment and with RA i stand no chance ! Maybe i will just have too drop a day or something ?
Thank god we have each other on this site to talk too otherwise i would go mad !
I went back to work when my girls both started school. I was lucky enough not to have to leave them when they were small. I worked part time and found that quite enough coping with work home and husband who was useless. Now I look after my mother who is a very poorly lady whilst coping with the ups and downs of RA. I did suffer from feeling guilty at first but as my health got worse and the strain of being a carer and a part time worker I knew something had to give. True I dont earn the money I once did but I am richer in time and I can have a rest in the afternoon when I need one. I also have a wonderful grandson who gives me such joy every time I see him. So what I am trying to say is dont rush back into work if you dont have too life is too short.
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