Lupus when working full time

[Sunflower-1]

Hi

I'be just joined and wanted to say hello. Does anyone find it difficult coping with lupus and working full time?

If anyone has any advice or tips I would be glad to hear them.

Thanks

[imzi]

Hi,

Yes I find it extremely difficult, this is the second time this year I have had to go off sick from work.

With working full time it's important to balance work with rest but this is difficult with family commitments.

My dr has urged me to drop my hours but I'm 24 which I don't think is the best time for me to go part time but then again health is priority.

The main thing is to make sure you rest if you are working full time. When I don't take time to rest I make myself really unwell.

Hope you find some help on this forum

I.x

[Sunflower-1 in reply to imzi]

Thanks for your reply. Sorry to hear you're having a difficult time.

I think I will try to rest more in the evenings when I get home from work and see if that helps.

Sometimes I feel so exhausted even to do some exercise or my hobbies.

[imzi in reply to Sunflower-1]

I know how you feel it's rubbish not being able to have a normal routine and to be able to go out after work and do your own thing but we need to take care of ourselves. Maybe if you did drop some hours you would feel less tired and have more time to do your own things?

Whatever you decide to do I hope it works for you.

I. X

[Sunflower-1 in reply to imzi]

I do find it difficult especially as i have a demanding job. I wont be able to drop my hours but i will take control of my stress levels. Thank you.

[whisperit]

Welcome, Sunflower,

I had to take ill health retirement earlier this year as I found that the unpredictability of the illness made even part-time hours impossible. But of course, most people do seem to manage some work. My suggestions would be to be prepared for all eventualities. In particular, join a union, get hold of your company's ill health policies and get familiar with the procedures around sick leave etc.

You may not need any of this (my NHS employer was very understanding and the whole process was handled very well) but in case you do, it can be very helpful to have this at your fingertips before you are feeling very unwell and trying to sort out stuff in a crisis X

[Sunflower-1 in reply to whisperit]

Thanks - that's very helpful and something I will consider.

[Kimbobaggins81 in reply to whisperit]

I can definitely recommend joining a union! I made the mistake of not doing it. Protect yourself from all eventualities. Good luck! X

[Sunflower-1 in reply to Kimbobaggins81]

Thank you - that's very useful to know!

[Natura]

Hi sunflower...i just went back to work full time a month and a half ago, because the job offers health insurance, which i need for my family. I am exhausted, and I push myself to food shop after work, cook dinner every night. I am having a flare today. Might have to go to clinic. Bad Uti or just plain interstitial cystistis. I was drinking green tea the past couple of days. I dont know why I started again, but i think this is why I am having a terrible time now. I have scarred kidneys .

I try to nap when I get home, but havent been able to. I try to rest on the weekend, but have food shopping again, laundry, cleaning to do. I am wondering how long I can keep it up. My husband is not doing well with health either, but we have to keep moving forward. I will continue to work as long as I can. My girls still have 2 more years of high school. Maybe we can move then to a lower stress place. I have been wanting to live in the country my whole life. Try to take care of yourself best you can.

[Sunflower-1 in reply to Natura]

Thanks for your kind words. I will take care of myself.

Oh dear sounds like your having a tough time. It might be easier for you to do all your food shopping at the weekend instead of after work? I certainly find it easier to do this.

I try to prioritise tasks/chores at weekend so I don't tire myself out too much.

[Natura in reply to Sunflower-1]

I do food shop on the weekend, but always run out again because we need something. Ugh.

[Sunflower-1 in reply to Natura]

Ah ok I understand.

[Sara_A in reply to Sunflower-1]

I have resorted to having my food shopping delivered as the pain and fatigue just made it impossible and then my memory was so bad it was just stressing me out even more being in a supermarket! I find it so much easier esp as I have 2 kids under 4!

Somedays I get to the shop park up and then just drive straight back home again cos I just couldn't manage to get out the car and go in the shop!

Try and make things a bit easier for urself X

[Sunflower-1 in reply to Sara_A]

Hi Sarah

Thanks for replying. Oh dear sounds like you have a rough time dealing with it!

I'm realising I have to look after myself a lot better and am in the process of looking for a less stressful job and getting to bed a bit earlier.

I try to plan things so i'm not rushing around or stressing at the last minute. It all helps!

Thanks

[Bee1london]

Hi Sunflower. Yes, I really struggle. Its probably the hardest thing to balance and my home-life does suffer as a consequence. My Consultant gets frustrated that I put work first but its a probably the only place where I can be 'normal' or at least pretend to feel 'normal'! I work in HR and disability employment so I'm lucky that I have a really understanding employer. They let me condense my hours and work long days on Mon, Tues, Thurs, Fri so I can have Weds to rest. I can also work from home sometimes. I decided to be open and honest with my closest colleagues and boss. I gave my boss the Lupus UK booklet for employers and I ensured we completed a 'reasonable adjustments' form so it is on file that I have declared my disability and am covered under the Equalities Act. PM me if you want me to send you a copy of the form. The form is actually really 'vanilla' and not scary at all but covers the essentials. I agree with Whisperit. Its better to be prepared for every eventuality and would recommend getting hold of your companies policies and procedures just in case. They should be in your joining documentation or employee handbook (intranet if a large company). I'd also keep your contract handy and keep notes of any 1to1's, meetings and Return to Work meeting notes if you've been off sick. I represent a lot of clients who don't have this info and it can make it really difficult to follow a time-line of events if employers do ever start formal procedures. There are loads of charities who can help with 'job retention' stuff like this for free so happy to recommend the nearest one if you like. The one I work for in London is mainly mental health and people get referred by their GP or hospital professional. Health services are starting to pick up that its really important to try to help people retain their existing employment if possible

Home-wise I make sure I do all my shopping on-line. My friend is a cleaner and does a couple of hours for us every week. I try to rest when I get home or have a quiet day before a big meeting or event.

Best of luck with it all. Take care and PM me if you want any of the docs.xx

[MargaretGail]

I worked for about 20 years with few issues but suddenly had kidney failure about 10 years ago and was off work for 3 months. I recovered and got back to work but had to take care how i managed my days. Then 3 years ago my health quite suddenly deteriorated and i had to take ill health retirement. It all sounds quite dramatic but i was for a long time able to hold down a very responsible role. The only way to do it was to share the jobs out in the house, and have a cleaner plus be in close contact with Occupational health.

[DenverKUK]

I'm not fully diagnosed yet but my rheumatologist suspects it for me as nothing else fits.

I work full time for a law firm and just finished my law degree last year. I'm knackered all the time but I've found just explaining how my symptoms affect me that Ive been really well supported. I make sure I get up and walk around every so often and gave taken to walking on my lunch break.

I've also started exercising with a personal trainer and it's helped me immensely! Still tired and joint pain but nothing is worse. I sleep better since e exercising and I just try to be a little more careful about doing 8 million things on the weekend. I had 3 busy weeks in a row with 2 trips to London and I e of my girls had a slumber party so I had 13 kids sleeping over...not my brightest idea! I was in bed the whole next day and in bed by 830 every night the following week.

Think you have to listen to your body as best you can. What kind if work do you do?

Kristi

[Sunflower-1 in reply to DenverKUK]

Hi Kristi

Thanks for replying. What sort of exercises do you do with your personal trainer? I try to do pilates at home as I feel this helps stretch my muscles and eases back pain.

I generally tend to have a flare up when i'be over done things. A bit similar to yourself really ie. Busy weekends and not enough rest.

I work as a secretary in Finance so as you can imagine its quite stressful and demanding physically and mentally.

I am listening to my body more nowadays and if I feel tired I leave chores until the next day.

[DenverKUK in reply to Sunflower-1]

I am a runner, but have it up for about 4 months while trying to figure out what was going on. I slowly started running again maybe once a week a couple months ago when the rheumy said just see what you can do.

I'm doing weight training 3 times a week. Usually exercised that involve full body. It works for me and I eased into it. I just rest when I feel like I need to. Listening to my body is really the hardest part!

I imagine your job can be quite stressful. Try some yoga, hot yoga is great for beginners and think it is easier on your muscles x

[JenniferW]

Hi Sunflower

I have had lupus and rheumatoid arthritis for four years now. My work has been very supportive, allowing me to work from home or take days off as needed, but last year I decided to drop my hours to 6 hours a day rather than 7.5. I found this to be very helpful as it reduces the length of my day and allows me to manage my energy levels better. As it is common for women to want slightly reduced hours at times due to childcare I don't think it has particularly affected my current career prospects (although any long term thoughts of management type jobs have had to be given up).

[Sunflower-1 in reply to JenniferW]

Hi Jennifer

Thanks for your message.

I don't think my role will allow for reduced hours as there's no one to cover my work.

I am thinking of getting another less demanding job that I can manage.

I haven't told anyone at work of my illness because i'm not close to anyone and i'm afraid I will be seen as the 'weakest link'.

I was made redundant from my previous job not long after I returned to work after being diagnosed.

[fabwheelie]

Hi the charity Lupus UK have some booklets and info about working when you have Lupus, and includes a guide for employers ... lupusuk.org.uk/working-with....

Everyone is different so it's probably a case of seeing how much you can do work wise . Some people manage full time work, other have to go part time or even stop working. I had to retire due to ill-health due to my lupus ... I was just far too exhausted all the time when I tried working. I really struggled accepting that I had to give up my career but for me it has been the best thing for my health

Be realistic about just what you can and can't do. Lupus is covered under equality law so employers do have to make "reasonable adjustments" to help keep you working .... again the adjustments needed vary from person to person ... they may include things like putting things in place in the work place to help if you have bad UV/ light sensitivity, allowing flexible working, later starts, or working from home, allowing you to do "lighter duties" at times when you "flare up". Allowing a certain amount of "disability leave" so that if you are off sick or need medical appointments that doesn't go on a "normal" sickness record and so prevents things like sickness policy and sickness capability proceedures being triggered too early

With Lupus if you get fatigue as a symptom (and most of us do) you will have to pace every thing you do in order to deal with the fatigue, so factor in the fatigue work causes along with fatigue from running a home, having a "normal" social life etc. The "spoon theory" is a good way to understand how every activity uses energy when you have lupus .. . butyoudontlooksick.com/cate... It's useful to help you pace yourself by considering how many "spoons" you have and how many you need, and can also be useful to help explain the need to pace yourself to others

... Unfortunately you probably will not be able to do as much as you could when you were "well" and pre-lupus. However with a good sleep regime, good paceing, and looking after your health as best you can it is still possible to have a good life despite Lupus, and many people do manage to work when they have Lupus

[Chanpreet_Walia LUPUS UK]

Hi Sunflower-1,

Welcome to the LUPUS UK HealthUnlocked Community!

We offer a free information pack that contains factsheets, guides, a list of helplines and LUPUS UK contacts who you can speak to over the telephone. To download or request this pack please click here: lupusuk.org.uk/request-info...

Lupus affects everyone differently, with some people more severely affected than others. Due to the fluctuating nature of lupus, the symptoms can vary day-to-day. This can make it difficult to maintain a consistent level of working. We published a guide for people with lupus who are in employment or are looking for employment which you can read here: lupusuk.org.uk/wp-content/u...

All the best!

[VickiiL]

Welcome Sunflower!

I've recently took the plunge and reduced my hours at work from 40 hours down to 25 and I really can't believe I beat myself up so much trying to convince myself I was making the right choice! I'm only 23 so it was very difficult for me to decide but I'm so glad that I've reduced, everything seems so much easier because my body is getting the rest it so desperately needs and I feel better for it, I'm actually able to do things with family and friends once or twice a week too which I've always really struggled with in the past! Luckily I work in retail so I have the option of accepting extra shifts when they need cover. Working full time is excellent if you can! I was fine with it at first but flare ups have gotten so frequent that I knew it was time to make a change!

All my days were merging into one, work, fall asleep as soon as I got home, sleep through the night to my alarm, still not want to get up, and work again.... it really wasn't a life I wanted. If you're coping with full time work please remember DON'T over do it, listen to your body when it tells you to rest, whether it means a couple of days off sick or even just cancelling social plans at weekends, if it's getting too much you'll know it's time to make a choice. Good luck!!!! I really hope you're able to stay full time!

[Sara_A]

I don't know how you manage to work full time! I haven't been able to for many years since my early 20's am now 38. I used to practically collapse with fatigue at work before I had to go part time. I worked as a nurse in a&e at the time which didn't look good when the nurse had to get stretchered out ha!!

I now work 15 hours a week but am lucky to have an ok paid job and a partner with a good job otherwise it would make life very difficult. I can't work 2 days in a row tho that would just kill me and even after a 10 hour shift my legs are so painful I'm crying in bed!

So I really don't know how u manage it but I know there's not much choice, but if u do have options then I'd definitely consider cutting down as its not worth making urself ill or worse, I was so fed up of people saying how tired and s*** I looked (like u need anyone to point that out!!)

When I was in my 20's I used to be on dla and worked 2 days a wk so obviously that helped but I know it's so hard to claim stuff.