Crashing every weekend

[markb1113]

I work 4 days a week as an Internal Medicine PA and manage the office. My average work day is 11 hours having to work through lunch to get caught up. My question is this. How many people here who are still working have to crash for 2-3 days to recover from the week? I feel so guilty just laying around but I can't help it.

[Barnclown]

The illness does this to us. I hope you can resist this guilt thing. Guilt is a stress...and lupus feeds on stress.

I used to crash like this when I was working long hours right through lunch at a high pressure job involving responsibility for tight deadlines & big budgets. And I was constantly crashing despite going to sleep right after I got home each day. But my infant inset lupus was unrecognised , so I was coping without the right prescription meds (instead I was on prescription NSAIDs & analgesics which didn't help much and turned me into even more of a zombie).

Those years were miserable. During that time, I negotiated the right to work from home...this started with the odd afternoon....eventually I was doing 3 days out of 5 days at home and not crashing quite so hard & so regularly, but I still crashed even so,. It wasn't long before I finally gave in: took voluntary redundancy on health grounds. And my firm kept me on as a consultant until I wasn't well enough to cope with that.

Then I had 20 years nearly housebound before finally the NHS figured out my lupus & treatment began to give me back enough stamina & resilience to mean this sort of crashing wasn't a constant prob.

Your post has me wondering if your treatment plan meds could be reviewed...maybe an adjustment is needed? Either that, or could you negotiate some sort of change in work pattern? over the years several people here have managed this

Am sure you'll get more replies

Take care

🍀🍀🍀🍀 coco

[MandieR]

Thats how I used to be, then it got less and less and now I am unable to work at all

[Charliebear68]

I'm still going through the process of getting diagnosed but had symptoms on and off for over 10 years. I am not alone in this as the more posts you read on here, the more you see that this is the 'norm' - not great...

My current episode started Valentine's weekend and I still feel like a bag of 'you know what'. I thought I had flu but this absolutely floored me and had to take a week off work. I had started a new job November gone and was loving being out and about meeting my new clients. Great colleagues, good pay and thought that things were finally starting to turn around. Then the flu...that got worse to the point of being almost bed bound. I would have been only for doctors visits...which at the time were useless - it's a virus, it's CFS, it's in your head...got a note from one GP for 2 weeks with 'flu like illness'.

On the Friday of the last day of cover, I had a phone call from my manager to say that they were coming on Monday to collect the car, laptop and phone. They finished me. No consultation, no written notice, just collecting car,etc.

I had a letter from them today with my last pay cheque. No written notice still but I'm too tired to do anything else.

Please tell your employer - you need support from them. If you carry on like this, you will crash and burn! I urge you to seek out help and support. You will get lots on here but you need to look after yourself too.

Keep us posted and good luck!

Charlie x

[Barnclown in reply to Charliebear68]

This is dreadful charliebear. What a way to be treated. Am feeling dismayed...am so sorry! 🙁

I hope the diagnosis process moves along promptly for you

Hang on in there...

🍀🍀🍀🍀 coco

[Hidden in reply to Charliebear68]

Charlie bear that's awful! I had similar 15 years ago. I had to go home at lunchtime to lie down thank goodness i lived a 10 min drive from work I could never have worked in the city! Left work at 5:30 made dinner, ate went to bed repeat next day. Weekend spent recovering... in end boss asked me what was wrong as he would give me a task and by the time I had returned to my desk 10 steps away I would have forgotten I had even spoken to him let alone what was said. I had to say I had suspected ME. He said I could come part time while I finished the project I was on and then we would sort something out. That something was to fire me. I had been there 11 months and your rights don't kick in until 12 months of employment apparently... I am a web designer so at least I had a job I could freelance with and I ended up working for myself. Not everyone can though can they? I felt really sh***y after they fired me it is not a nice feeling esp when you are doing your best to cope with illness and everyday stuff most people take for granted. Sending you big hugs xx

[Charliebear68 in reply to Hidden]

Aww darling - life sucks somedays. I sometimes look back and think - did that actually happen? Hearing your experience makes me realise that we aren't alone in this nasty disease. I was made redundant after my first 'flare up'. I was so bad that I didn't care at the time. I eventually got better and used my redundancy money to open a coffee shop...then had a catastrophic flare up and the business went under, my marriage failed and I felt like the world's biggest loser. My doctor put it down to CFS/ME but it never really felt right but I had no support back then and had blind faith in my GP.

Fast forward to past couple of months..I have the most supportive partner who understands how 'naughty' autoimmune is to diagnose (he is coeliac) and is questioning my GP on blood tests. It is really down to him that I have my referral as I'm too tired to fight on my own.

Even though Bob is amazing, I can still feel very lonely so then I come on here and then I'm not lonely anymore. A bit of a cliché but it's true. I have more strength to fight because I know that I have friends standing right beside me. And hopefully you guys know that I've got your backs too. Together we are strong.

Hugs received - thank you

Charliebear xxx

[Hidden in reply to Charliebear68]

Oh I am glad you have found someone who understands. My partner at the time (we were engaged, had been together 4 years, bought a house together) was far from pleased or supportive. We were in our late 20s and he was a programmer on about £80K a year but he resented having to support me. Needless to say we broke up within the year! Being with him had done my health absolutely no favours: we moved 4 times in the 4 years we lived together (one move was to the States for a short time) each time for his job. I was always expected to just walk into another job everywhere we went. You can imagine the stress and of course, lack of support, finding new doctors etc. My husband tries to understand, but I know he finds it hard. I've been very tearful for the past few weeks and was worse yesterday as I saw the letter the rheumy had sent to my GP - I will post about that later for opinions I find this forum very helpful. I have no DX of lupus (the rheumy apt was my first, only took 25 years to get the referral) - I do have a lot of the symptoms, but I have negative bloods. There is however a lot of auto immune disease in my family - opinion seems to be divided on whether that means anything though!

[Charliebear68 in reply to Hidden]

Oh my darling - I'm a good listener if you ever want to talk. Just remember this: what doesn't kill you makes you stronger! I promise not to sing 😆😆 but seriously, I'm here.

Chin up chick,

Hugs 🤗🤗🤗Charlie xx

[Loopydroopy in reply to Charliebear68]

Charlie, what meds are you currently on?

[Charliebear68 in reply to Loopydroopy]

Hi Loopy,

At the minute I'm on over the counter ibuprofen and paracetamol which does nothing. Just been prescribed amatryptalline which knocks me out! First pill I slept for 16 hours and was so groggy the next day. To get honest I'm a bit frightened of taking it again. I felt like hell and was still in pain. I've no faith in my GP so I'll just wait to see rheumatologist.

Charlie x

[Loopydroopy in reply to Charliebear68]

What mg amatryptalline? I'm on 25 mg am and 25 pm. It doesn't phase me. Maybe you're on two much??

[Tinythepanda]

Hi,

Yes I can relate to this. When my symptoms first started I worked 3 days a week but they were often between 12/14 got days including the commute. I would spend the next 4 days simply recovering.

I started a new job a year ago and now work Monday-Friday 9.30-2.30. Although it's more hours and more days I'm far less fatigued and feel better in general.

I know I'm lucky with my hours with work and it was a real life changer.

[Charliebear68 in reply to Tinythepanda]

Tiny that is brilliant - we'll done you!

C xx

[Chezchat]

Yes, I am just the same. I am undiagnosed but chasing diagnosis at present. I work full time and most of my time off I spend resting just trying to feel well enough to go back to work the following week. It's rubbish. If I get a cold I am frequently off for a fortnight or more with it. I do have better times as well though, it's very intermittent. Try not to feel guilty. If you are like me you need to work to pay the mortgage so I just have to get on with it.

[Charliebear68 in reply to Chezchat]

I need to work. I'm having to use my savings to survive but I am not going to let it get me down - stress is toxic and I know it could be worse.

It's good you hear you have good times too - guilt is an old friend of mine and we do shake hands quite often. When he comes calling, I put on cheesy music (usually Abba 😊😊) and he skulks off. Not every time but it's hard to feel guilty when you're singing all the words wrong or out of tune.

I feel for you my darling - be careful!

Charlie xx

[Loopydroopy]

That's my life every week. I have my son and daughter in law a baby shower yesterday but had to take a couple of vacation days in order to recover.

[Charliebear68 in reply to Loopydroopy]

Loopy - you are amazing. We can't put our lives on hold. Hope the babyshower went well - any piccies?

C xx

[Loopydroopy in reply to Charliebear68]

You're amazing, I've been reading more of your story. So sorry for the work stuff. The doctors I work for understand to a degree....as long as it doesn't affect them in any way. The baby shower was great time for all and currently I'm on steroids so it didn't wipe me out too much but very glad I took today off.

[maggielee]

I too have had my up & downs working full time and some days I just eat and rest after work, some days force myself out of bed. Weekends are a juggle, rest, try for a walk or do exciting things like paperwork or housework. This weekend was an exception of doing all of it walk, housework, cooking, just paced myself, thinking there will be a payback soon... Stinks about work letting you go I did tell my boss, but i don't discuss my illness with workmates or boss, just say when I have doc appt. if I can't get appt at lunch or after work. At the end of the day they just want workers to work, I hope I don't get worse and have to deal with sick days.... Just try to do my best...we will see if it progresses. Ml

[Charliebear68 in reply to maggielee]

Hey Maggie,

Yes it's ****. I do feel like a failure but if I think about it too much I'll go mad. I'm holding it together because the alternative is I end up broken.

Anyway - it's there loss! I can do better 😆

You are an inspiration - just pace yourself

Charlie xx

[johare]

Yep, I was a nurse I felt like I was going mad. Constantly playing catch up. This was until I crashed and ended up off work for a year initially. I had a graded return to part time but eventually had retire. Please don't get to this point. Go to you GP now and explain how you are feeling. You can approach HR with your GPs support now. The computer can be adapted, lighting in the office, etc small things that may help. A lessened load now could keep you there long term.

I understand that you are an intern but I still feel you need to look at you terms to see were you stand with sickness. As burn out can be long term if not rectified. Keep us posted.

[Paul_Howard Partner LUPUS UK]

Hi markb1113 ,

Are your employers aware of your lupus? Have they made any adjustments to help you manage better in your role?

We have a couple of booklets about lupus and employment which may be helpful for you. You can read and download them at lupusuk.org.uk/working-with...