If you have chronic illness and or chronic pain - can you share tips on how you manage working?

[myfuckingfeethurt]

Well, how to manage everything basically, but work is the one I'm finding most daunting. I'm not doing paid work at the moment, but volunteering, and I cancelled today after a bad night. I'm fortunate I can do this, but deeply frustrated. I want so much to earn money, but I feel completely overwhelmed. Today for example, I have to phone 3 separate doctors to try to get different problems seen to, all need immediate attention either because I'm in pain or because they are the type of thing that can get serious very quickly and require hospital. I feel about 80 and I'm only in my 30's.

My chronic illness is managed very well and my doctors think I'm doing super well, especially for somebody who has been ill for as long as I have. Which I am, if you look at blood testing and that sort of thing.

How do you manage on bad days? How do you manage after a run of nights where you sleep very little?

Are there any hacks you have found that really help?

My work is quite forgiving as I disclosed my condition at interview
My sickness triggers are higher so more time off before I start triggering meetings. I take annual leave for planned hospital appointments and try and see my GP in the evening or take 10 mins to do a telephone appointment. Bloods done on annual leave
Lack of sleep.. I just get on with it and then nap when I finish work as I'm permanently tired anyway

Have easy meals/grab food in for when I just need to eat and sleep. And I do most cleaning and batch cook at the weekend. Single so there's only me to pay the bills

I think it's exceedingly individual though. My chronic problem is migraine. 24 days a month when unmedicated. It's taken me years to get the backbone to demand access to proper treatment which is now working.

However, I gave up my career in the police in part because of migraine as it was uncontrolled and I was struggling. I was using 80% of my annual leave to cover up my true sickness record and was a state on during a lot of shifts. It was getting harder and harder to cope and to hide it.

Here I am now though, Civil Service, I WFH about 95% of my working time which means I have complete control of my environment so far fewer migraines are triggered. I can take medication at home and not have to worry about the side effects, I don't have to worry about driving as I frequently lose my sight in one eye during an attack, I have access to ice packs and heat pads and anything else I need. This means I can jump on the problems earlier and that also (usually) reduces the severity and longevity of each attack. I think I've taken 2 part days and 1 full day off sick this year when I had to give up and go to bed.

I think being proactive about your healthcare needs is such an enormous part of chronic health management. I never allow myself to get to nil meds for example, and have a little emergency pack in the car and my handbag.

I'm also lucky to have a fabulous boss who trusts the team to make up the time we take off for appointments etc on flexi time. I'm not currently having to fight for anything on the basis of my disability, but I had to with the previous CS agency and frankly it was appalling how badly it was handled. Another disabled colleague who was blind had sued them successfully three times because they were so shit at managing her needs - one incident led to a broken arm due to piss poor management of her working area to keep her safe!

I work 4 days a week to give me a day to be sick- rest, medical appointments, catch up on hours at work if needed.

I batch cook using a slow cooker and lots of prepped ingredients so I throw in the pot and go as even 30 mins standing up chopping veg can be too much for me.

Knowing my triggers and keeping on top of them.

Sadly by only doing 20 hours a week. It’s all I can do, around health and wellness appointments.

I'm not working at the moment.

When I was -
I was a teacher

I worked 0.6 spread across 5 days so it wasn't as long each day

The building had a lift so I didn't have to do stairs.

I was exempted from staff meetings, assemblies etc unless online

I had a disabled space painted for me pretty much directly outside my classroom

I used drugs to control the pain - naproxen and codeine, also caffeine sometimes.

Batch cook at weekends or get deliveroo

Amytriptyline to help me sleep

I don’t currently work as my chronic illness and pain has worsened but when I did work it was very hard. I drove which meant I couldn’t take my pain relief. When I get a job in the future, I would definitely get a work from home job with the possibility of a one day in the office for that reason. I got a lot of takeaways and ready meals as the last thing I wanted to do was cook, to be honest this was also on the weekend as well. Me now, I would definitely batch cook or get those meal plan boxes where I wouldn’t have to think about the ingredients or portioning - it’s just set up to cook quickly.

I think it’s also dependent on your job and how accepting they are of people will long term sickness’s. My job wasn’t very accommodating, I was shamed everytime I had an appointment. My appointments were often and I had to take an entire day as I had to travel to central London (2+ hours in rush hour each way). I get why they would be annoyed - but I couldn’t help it. If I called in sick, they would be rude and tell me I need to ‘try harder’. They just overall were asses as they didn’t understand.

Following for tips, starting a FT role in the New Year and panic is setting in!

I have a couple of conditions, and I'm a single mum. I work 9am to 3pm Mon to Fri. 4 days are WFH with one day in the office (all staff have this, not just me). I often sleep for a couple of hours straight after work, DD and DS are now teenagers so can take care of themselves, and I use ready meals, prepared veg etc to lessen the load.

My work are also very supportive and I have an understanding boss, which helps massively!

I was diagnosed with a couple of chronic conditions at the start of the year so only just getting used to managing them. I don't have that many GP appointments as they are not helpful so I manage myself. I take amitriptyline to help me sleep. I was already working part time and due to an office move I will be doing two days wfh and one in the office. I am not sure how that will go as the office is further than it was before and driving is an issue for me beyond 25 minutes.

At the moment - I am somehow working full time in a v stressful job. But only managing it because

• DH is pretty amazing and does most stuff around the house, so are the children
• we have a cleaner 2x a week and a dog walker
• I don't have energy left for a social life./hobbies so accept it t is work /kids/rest most of the time.

-my work are very supportive and I am encouraged to take time off if they can see I am struggling (I tend to push myself too hard ) -my specialists /GP accept that working is very important to me and don't push back when I say I don't want to be signed off

Oh and I forgot to say- I can work from home at least twice a week, more if I really need to

By being self-employed, working from home, and setting my own schedule.

I've a chronic pain condition and on many medications, one that pretty much kills my immune system, so I also get a lot of nasty infections.

I haven't slept a full night in 5 years and am usually up before 4am getting painkillers and coffee to sort me out.

As far as work is concerned, I just have to do it. I work full time, generally WFH, but it does include travel, which means driving long distances.

It's bloody hard, but I have to do it.

I work part time for a start and work are aware of my condition. I try to make life as easy as possible on work days and do generally go to be very early. I make sure I stagger annual leave strategically so that I don’t go too long without a small break. During annual leave my kids often remain in childcare so I can use the time to recover.
I take multivitamins and supplements everyday and try to ensure I’m well hydrated. I make sure I pace myself and keep weekends quiet if I have a busy week.
A bit more condition specific but I have regular massages/chiropractic appointments when the pain gets too much. I also try to walk as much as possible as this helps for me.

Work part time, but even that is becoming too much. I had to give up my much loved career when diagnosed and slowly I've had to work less and less, now working 4 hours every other day (or supposed to be) unfortunately stress triggers symptoms and I deal with the public and I'm now at a point I just can't cope with the shitty behaviour of people so hoping I can retire in next couple of years (very early)