Problems with work.. again.

[teecayc]

Well haven't been on here properly in absolutely ages.. (There must be lots of new members so hello :)) Now feel like I'm ready for a good old moan. Mostly brought on by what happened at work yesterday. Working over my hours AGAIN. (Sorry, this is going to be a long one.)

I do 6 hours a week working as a care assistant (2x3 hour shifts) and I'm usually the extra person on. Well, not yesterday. Somebody on shift had taken someone to the hospital and wasn't back by the time I was meant to be leaving.. so I got roped into doing it Work is a very sore subject for me. They've actually been ok with me reducing my hours.. and after some very "not very supportive managers", we have one that is fine with me figuring out my own hours to suit me. (Although I am a bit peeved that she didn't even know what it was what was wrong with me and has made no attempt to find out how it affects me/what the illness is! >:()

The thing is, the 3 hours that I do absolutely kill me. I go earlier to sit before I start and try to sit down whenever I can but in that kind of environment you always feel you have to get up and help when the buzzers are going. If I'm not getting a lift home I'll sit for 30-60 mins after to recover a little bit and try and sike myself up for the walk. Then get food and try and bathe or wash when I get in. I try and plan everything so I have no plans consecutive days running (not always possible, especially now seeing a psychologist on a regular basis so out another day) because I just get so fatigued. I just dread going out anywhere because it means having to get up, then dressed and out somewhere. Then how I'll feel the next day. I know a lot of you can relate to this but everyone else.. I'm meaning at work.. just doesn't get it. Then adding the fact I've been relying on Tramadol emotionally and physically for over the past year. Without it I think I'd be a complete wreck! (I've been to the doctors about this now.)

Back to at work, before I knew I was stopping for longer I was having to get a chair and sit down while sorting the food for tea and pouring cups of teas :/

When I found out I had to stay I went outside and sat and cried. It just absolutely completely exhausts me. I ended up staying till half 6. By that time my boyf had come to get me so some of the time I was crashed out sat with him. When I had to move.. and I'm not kidding here.. I was crawling on the floor because I just couldn't get up. I was waiting for the lift to come down so sat down.. just crawled into it and crawled back out at the top

Luckily, my boyfriends mum came to pick us up. think I'd be sat there til 10 'o' clock otherwise. Finally got into bed at quarter past 2 but the aches in my legs were unbelievable!

I've told them before I can't do over my hours.. nobody listens To them, yes, it's just an hour and a half. To me.. it affects the quality of my life!

So I don't really know what to do. I'm thinking of asking to reduce my hours further.. but will one hour really make that much of a difference? Should I stop altogether? The only reason I haven't is because I'm worried about money.. and I'm currently going through an appeal. Just waiting for a date for my tribunal to come through. How long can you do this to your body though. I've carried on working for 4 years through this and have never just given up and said I'm not working.. always worked myself over the limit. I don't think I can do it anymore

Has anybody else been in this situation? I could really do with some advice. How would you even go about stopping work? and how would it change the appeal?

[Lupo30]

I was exactly like you! In the end, I just had to stop as I was killing myself. I have stress also with appeals etc and the DWP trying to get me back to work, but remember how you feel so well, I want to cry for you. Unfortunately with the way the benefits system is going now, there is going to be more and more of us. I wish you luck. Yes, it might not seem many hours for a normal person, but when you suffer with debilitating fatigue anything that stretches us can make you mentally and physically very sick.

[teecayc in reply to Lupo30]

Thank you Lupo30. It's funny that we seem to be the only people that think that!

[janjan78]

teecayc I really for you.......I am at present going through a kind of similar thing.....also in the care sector but homecare not care home.......I am at present an undiagnosed lupie (loooong story!) I often get asked to cover the first hour of the lunch shift which is not much in the grand scheme of things but like you it has a knock on effect for me also it's not just that hour or so it's the rest of the day it affects apart from the fact that it's my own shift that someone else is covering but they can't get cover for & I'm having to do a piece of it anyway it's like they're pushing the extra hours onto me more & more as I'm a bit of a soft touch & don't like to see anybody stuck and they know this from before I went off on sick leave

I have been off on 6months sick leave (nov.'11-may '12) initially to get on top of migraines but the lupus symptoms which I hadn't realised what they were (for years!) came crashing in then had 4x wks phased return and discovered during this that I couldn't manage my full shift (7am-11am & 11:30-2pm) so at present I am only doing reduced hours of 7am-11am as per agreed with my line manager & GP & my wages would be made up with my holidays that I wouldn't possibly be able to use before our work year ends anyway....so I'm not losing out on my wages thank goodness but my holidays are fast running out & only have another 4wks worth left that I can carry this arrangement out (will discuss this with my line manager at my appraisal on fri.) so i'm at my wits end as to what to do........I can't afford to cut back to just 4hrs a day (work a 4x days on/off rota) but I know I'm not physically able to go back up to my 7hr day (6.5 if don't inc. my break) but I don't see I have a choice financially......the shift I have is just about right & has about as much physical work as I can cope with i.e. showers/baths/toiletting/feeding/dressing & equipment use like hoists/stand aids etc. but the extra pasrt of my shift would nearly double this usage

Then like yourself I have my own house to run inc. housework etc. (though my hubby & son are angels & help where they can but some things just need a woman's touch!) & family to feed etc some days I shower in a trance & don't remember if I've washed my hair or not!!! I collapse into bed by 8:30-9pm if not I'd never get enough sleep to start the next day all over again

Have no idea where to go from here either

Wishing you all the best in how things go for you, please keep in touch on how things progress as will I on how things go for me

Take care.x.

[teecayc in reply to janjan78]

Sorry to hear you're going through the same thing janjan78 I just replied to this but it hasn't posted. Will try again tomorrow, must get some sleep. Didn't want you to think I was being ignorant by leaving this one.

[teecayc in reply to janjan78]

Hi again! That's definately the problem with people like us doing caring. You're always expected to be on the go and doing something. It's makes things so much harder when you struggle to do the things to get there in the first place. I just want to scream sometimes when people just generally ask if I'm ok. NO! I'm not ok! I've just spent ages trying to get ready to come here, managed to walk and am exhausted.. And now you want me to work?? I just think sometimes what the hell am I doing? Can you imagine those people feeling the same? Putting up with all this and doing the same to their bodies? I don't think they would be!

I actually still live with my parents. Well, moved back out and back in a few years later.. And then got ill so that completely changed the future I was planning. My Mum is also ill with COPD though so we can't really help each other out nowadays but I do have a really supportive boyfriend. He'll help out when I'm struggling with things.

I hope you manage to sort something with work.. And wishing you the best too

I will do, will be nice to know how you're getting on

[janjan78 in reply to teecayc]

Hey there teecayc.....I know that feeling only too well.....getting to work & feeling like I'm the 1 needing taken care off!!! lol I often think I'm in a worse state than some of the clients!!! lol but I get good days now & again which makes up for the not so great days so I try & get as much done at home as I can so I don't feel as guilty not doing as much on poorer days

I have had my meeting with work and as nice as they were about things they need answers also so I've been given 2 weeks to come back to them with a decision on whether I'm staying permanently on reduced hours or going back up to my full time hours when my final reduced hours line runs out in mid-sept so I've made an appointment with my GP to discuss things & it's a double appointment & I'm taking hubby with me so I've no excuses for brainfog getting in the way!!! lol going to request my medical file first though & go through it with a fine tooth comb as I have reason to believe it's not got all my symptoms that i've been telling them about every visit.......will see what comes from that

Hope things are well with you, take care

[teecayc in reply to janjan78]

Hi, sorry I missed this! How are you getting on? Are you still on your reduced hours?

Things are a bit better regarding work thank you. I have a sick note for 3 months as I went to the docs and said I wasn't managing. It's unbelievable how much of a weight has been lifted, it's near amazing! I'm not constantly worrying about fitting my "outings" in on seperate days etc, My stress levels have gone down drastically and I just can't believe how I managed to do that to myself for so long, physically and emotionally. Although clearly my manager had no idea. When I rang to say i hadn't been managing she came out with "well you did look a bit pastey the other day." I was swearing a lot a long time after this, I couldn't quite believe it. A bit pastey? Just insulting!

i've seen citizens advice again too and she clearly explained what the questions on the ESA form properly meant and I've scored up points!

Hope you're managing a bit better anyway

[Pipido36]

Just to add tithe above. At times I feel like I am only the only one suffering. It takes me more than 3 hours to get ready for the day. My body feels so heavy and so tired like I did not sleep, by the way if I don't take Zopiclone and hydro codeine I won't have much sleep. I cannot ever try to kneel down!!!! Coz I won't be able to get myself up without help. Many people always comment "you look well despite your saying you have lupus" they make it sound like I am pretending to be sick. Most days I cry because of the pain. It can take me years lol to describe how I feel and what I go through on a day to day basis. I get depressed and wish that one day I will wake up and it would have just gone!!!! It has helped me a lot to read what everyone else is going through. Take care.