Just to say Hi

[Marley1]

Although I have had SLE now for many years I am now coming up against so many hurdles and now too top it all I am going to lose my job due to this last 9 months. So thought I might be able to get some one who had had similar health issues. Just so you don't feel totally on your own as I do at the moment.

[quirkytizzy]

I lost my job due to my illness, too. It was a good job - the BEST job I'd EVER EVER had, no less. I still struggle with having lost that. Thank you for sharing this - it is good to know that I am not alone.

[Silvergilt]

I lost my job years ago due to my illness years ago. It was the last job I had for some time. It sucked, and was financially really difficult.

But it gave me something I didn't have before; time. It gave me time to realise how I had worked myself so hard I was nearly hospitalised. It gave me time to mourn and burn all my bodybuilding photos and diary books (a harsh step, but at the time it was what I needed). It gave me time to fight, and time to sleep, and time to get angry, and time to focus on getting myself together.

And eventually I was able to get my illness sorted enough and I found another job. And things were better for a while, because the one thing illness has taught me is I have to roll with the punches. Because then I lost another job and had to do the whole process again. And again. And again. But it gets a little easier each time.

No. You're not alone at all. We are many, and we are strong.

I wish you strength.

[Sarah74 in reply to Silvergilt]

Body building??

[Silvergilt in reply to Sarah74]

yep, I was a bodybuilder - lifted heavy weights to sculpt muscle, no steroid, back when women were still only just coming into the sport. I had about 11% body fat and at my peak had less body fat than the trainers at the gym I worked out at. I was strong as an ox, and I had originally wanted to compete. But, I started to overtrain because I wasn't making gains fast enough...probably because I had underlying illness, but nobody saw that because I was losing weight and because I 'looked so healthy'. Which is pretty much when I started getting sick in earnest.

[Sarah74 in reply to Silvergilt]

Wow thats impressive.. I love going to the gym, nothing like what you achieved, I'm a 3 times per week girl.

I did see a PT as I wanted to gain muscle but that ended up with me getting a severe attack of gout as kidneys couldn't cope with the protein, so now I just go to feel better..

How are you now?

[Silvergilt in reply to Sarah74]

Fat! And I'm not saying that as a call for pity, or even as something I'm ashamed of. I'm alive, and that's the main thing for me. I do yoga now, and I'm learning to accept where I'm a bit more. I may have looked good, and been 'acceptable' by being an athlete, but the damage I was doing to myself was gruelling. I'm learning a less combative approach to my body now which is helping me feel better, and also helping me make peace with where I'm at now.

As an aside, you don't need to eat lots of protein to gain muscle - you gain by lifting weight in increments or by training your muscles with resistance or by using bodyweight. I used kettle bells when I had a recovery period a few years ago and I really liked the results I got from that.

I guess it depends on your goals - if I was doing all this over again, I'd probably steer more toward the strength training as I was naturally very strong, while bodybuilding is more about appearance. Every body is different, and doing what works best for us is individual. Enjoy the days at the time, as long as you do indeed enjoy it! I rather miss it, but I'm learning to enjoy my time on the mat at home just as much.

[Paul_Howard Partner LUPUS UK]

Hi Marley1 ,

Welcome to the site. I hope that you find it a useful source of information and support.

I am sorry to hear that you are having difficulty with your employers because of your health. We have a couple of guides about lupus and employment which you may find helpful if you haven't seen them before. You can read and download them at lupusuk.org.uk/working-with...

If you need physical copies to be posted to you, please just send me a private message or email [e-mail] with your name and address and I can do this for you.

[whisperit]

Hello and welcome, Marley1,

I'm going through the same sort of process just now. A year ago, I had 3 part time jobs, and have had to give all of them up, one after the other. I am now getting by on statutory sick pay - about 1/3rd of my previous income. That will drop to zero in March, so I am now negotiating ill health retirement. It's a whole new life!

Mx

[Marley1 in reply to whisperit]

Yes it looks like that is the next option for me the biggest laugh in all this is I work for the NHS not the caring employee as such!!

[annesandi-HU in reply to Marley1]

Same happened to me NHS - 32 years loyal service and forced to leave under a very big black cloud which I am still under 7 years on :(.

[Marley1 in reply to annesandi-HU]

They really don't care they knew when they employed me I had SLE so nothing changed there yes they made justment they let me drop a day so I lost out financially anyway.

Sorry to hear about you being there for 32 years and them doing that too you. Pity they don't realise the more stress they give us the longer we are likely to be off as things don't settle down x

[Buffy14 in reply to whisperit]

Can't you get ESA ?

[Marley1 in reply to Buffy14]

I am going to look into what I can get I have seen that you can get quite a lot of help from here as well which is going to be great as I have come up.against quite a few brick walls in the past 😊

[Buffy14 in reply to Marley1]

The best thing to do is go to your councils welfare rights to help you fill the forms in etc as it can be a nightmare x

[Marley1 in reply to Buffy14]

Thank you so much for that much appreciated I will do that x

[annesandi-HU in reply to Marley1]

Good Luck Marley1 don't let them win like I did.

[EOLHPC]

So glad you posted Marley...this is an important subject and you've got some great replies

Not much I can add except to say: I'm another one who had a job I loved in horticulture, but ultimately had to stop working outdoors & shift into the office side....and finally I had to give this all up due to health probs related to relentless cumulative multisystem degeneration due to early onset immune dysfunction & connective tissue disorder going without daily systemic treatment.

My boss had been v supportive & understanding & flexible for years....letting me work from home a lot. But I became so poorly that I decided to ask for voluntary redundancy. At that point I was spending much of each day lying down flat and snoozing a lot. But even so I was somehow able to give 1 small client a little consultancy service from home for several years...which was just enough for me to feel a tiny boost of morale when I was ultra low emotionally & physically. Finally I gave up work altogether and several years later the NHS recognised my lupus.

6 years on, am benefitting greatly from my combined therapy oral lupus meds...I'm 63 and feeling less pain + more stamina & resilience than I've had since my 20s. But I'm still having to pace myself vvvv strictly...so I couldn't feel reliable on any workforce. Instead I'm dedicated to spending time most days on our wonderful LUK forum...funny how things work out

Thanks so much for posting

🍀🍀🍀🍀 coco

[Marley1]

I would just like to thank you all for replying to my first post about me losing my job I greatly appreciate your comments and time you took to post.

Thank you for making me feel not so alone