Hello - I'm new to this!

[Nickym2301]

Have just had to give up work and feeling very low and depressed. Also feel as though I've failed in some way. Any advice please?

[Treetop33]

The thing I'd say is many sympathies and go easy on yourself. There's all sorts of reactions you can have when getting a blow like this...relief (because you knew something was wrong), denial (my favourite - "I will cure it"), followed swiftly by depression and so forth. Our society does like to make people feel bad for having a chronic condition, as if it's their own fault or something.

I can't say what your best route through it would be. I try and eat well, de-stress, do some mild exercise, accept I have limited energy and ration tasks, prioritise (daughter comes first), take medication, hang around with people who are more chilled and accepting.

Take care x

[Nickym2301 in reply to Treetop33]

Thank you so much for your words of encouragement - it means a lot that you've responded. I am trying to do a lot of the things you've suggested and I'm hoping that this massive lifestyle change will feel more 'normal' in time.

Xx

[Treetop33 in reply to Nickym2301]

This forum helps (it's a very friendly one), and there's lots of useful info on it too. Good luck xx

[whisperit]

Hello Nickym2301,

I had to give up work in March this year too; a huge part of my life not just in time but in terms of my identity, social networks and so on. It has been a very tough process. Treetop's words are wise indeed - there's no one way to cope and sometimes you will probably not cope very well at all (that's me, anyhow). Best things I have done? 1. tried to keep active on internet forums and stuff 2. made other goals that I can work towards even while I am housebound 3. binge watched Unbreakable Kimmy Schmidt 4. denial. 5. talked to birds and hedgehogs.

Obviously, this is not a programme that is approved by NICE. But hey - whatever works?

Hang in there x

PS you do look terribly young to be retiring. Is that nice smiley lady in the picture your mum?

[Nickym2301 in reply to whisperit]

Thanks very much - sound advice that I'll try to put into practice.

PS: The picture is me with my 9 month old grandson (at the time) taken around March this year. 😊 xx

[Tonk]

There is far more to life than work.

It makes no sense, nor do you get any special reward, for being the hardest worker in the graveyard.

Don't let the media, politicians or people in general, make you feel ashamed because you are not able to work. If you have worked, then you have paid national insurance which is just that, an insurance! If your house burnt down or it was struck by lightening, then you would claim on your insurance and people would, more than likely, have a great deal of sympathy for your plight however, the media and politicians, who should know better, have succeeded in vilifying the chronically sick and disabled but, a recent survey has shown that opinions are starting to change back towards a more caring and sympathetic society.

Hold your head up high and be proud of who you are....The last thing we need as Lupies is more stress and worry.

[Nickym2301 in reply to Tonk]

Thank you for your kind words. Work has been such a large part of my life for so long it's hard to come to terms with no longer being 'needed'.

Hopefully I'll feel as though I've made the right decision in time. Xx

[Tonk in reply to Nickym2301]

Hi Nickym2301,

I do know what you mean. I had to retire a couple of years early due to ongoing health issues. I too had worked all my life and because of the nature of my work, much of my social life revolved around those I worked with. When one works shifts that cover Twenty Four Hours a day and Seven days a week, in a very close knit team, one is forced to run one's life around those commitments however, I found that my close knit team soon forgot about me and I found myself feeling very down and lonely. My wife reached Sixty at the same time and retired and we suddenly found ourselves stuck in doors with each other Twenty-Four Seven......This came as a shock to say the least!

I too went through feelings of guilt and worthlessness and I suddenly realised that my whole life revolved around Psychiatric Nursing and now I had little else in my life. I felt very low and started to question my whole existence and worth. Fortunately my wife was my rock and she helped me through it.

I became a part time silver surfer and joined several forums on subjects I was interested in.

I took up a few hobbies. I purchased films which I had always promised myself I would watch but never managed to get around to doing. I started to work my way through my music collection. I started to read classic literature which was something else I always promised myself I would do, but never got around to doing. To keep my mind active, I started to brush up on my language skills which were learned over half a century ago...That is hard to do given the medication and the brain fog. I also found the Dummies series of books very interesting and helped me not to vegetate. So far I have looked at computer programming, philosophy, psychology, economics and physics. I have loved it even though, my mind takes much longer these days to absorb the information.

Just for your information, I cannot sit for too long in front of my computer screen because it seems to bring up my face rash.....Yep, this Lupus tries to take over your life. As I've said before: "Lupus is incompatible with modern life."

Take care.

[Treetop33 in reply to Tonk]

I like your approach Tonk. I particularly worry about becoming allergic to computers, because I am a writer. I already prefer natural daylight to indoor lighting (except sunlight, also a no no). Maybe I'll go back to writing on paper, just like the old days! Or get a part-time job in a bookshop, and accept this is what it is :).

[Nickym2301 in reply to Tonk]

Hello Tonk

Thank you for sharing your story with me - many of the points resonate only too well. I too put everything into my work and now I find myself adrift with very few friends. My husband is still working and often works from home so I feel constantly in the way and have to creep around trying not to disturb him. I think he is finding the change difficult too and keeps telling me to 'find other things to do'. Easier said than done.

I am exploring some different hobbies but everything seems very scary at the moment. My confidence is non existent and I am constantly anxious.

Apart from that I'm fine! 😉xx

[misty14]

Hi nickym

Sorry to read you've had to give up work thanks to lupus!. Not easy to come to terms with but you will given time.

This could be a new chapter in your life. If your waiting for treatment to kick in , once it does you might feel you could volunteer somewhere a day a week and who knows where it could lead.

You've also got more time to spend with your gorgeous grandson, lovely pic of you both.

Lots of TLC needed at this time to grieve for the old Nicky and way of life. Then suddenly a new Nicky and way of life will emerge and probably you'll wonder how you had the time to go to work!.

Keep posting and hope you feel better soon. X

[Nickym2301 in reply to misty14]

Hello misty14 - thanks for your reply. Its been lovely to receive so many words of support and encouragement. I have been considering some voluntary work but will need to wait until I'm feeling stronger. Also, as I mentioned to Tonk, my confidence and self esteem is at rock bottom at the moment.

Xx

[misty14 in reply to Nickym2301]

Hi nickym

It must be and will take a lot of time to be restored!. Have you had to go thru a bruising process to retire from work on health grounds?. That doesn't help either. Citizens advice would help make sure you have everything your entitled to. This is a big life change for you which is why I said lots of TLC needed. It will improve but take a lot of time. Good luck X

[Nickym2301 in reply to misty14]

Hello misty14

I didn't go through any specific process to retire from work due to health - I just handed in my notice. I have never received much support from work - whenever I was off I was badgered to confirm when I would be returning. Hence I would always return before I was fully recovered. My colleague was also very unsupportive and would be very mean and unkind when I did return.

The straw that broke the camel's back was when I collapsed at work and ended up in hospital on a drip with various tests being run. Eventually got home at 2:00 in the morning and then my boss was pestering me by 11:00 the same day needing my help with work. I submitted my notice of resignation that evening. I was signed off work for 6 weeks so never went back. No card or leaving gift after 12+ years of service.

[misty14 in reply to Nickym2301]

What a horrible place to work nickym. Your better off out of there!. You gave them a long time and yet no leaving gift!. You might also have the bonus of your health being better away from all the stress!. How does the lupus affect you and how long have you had it?. X

[Nickym2301 in reply to misty14]

Hello misty14

It wasn't all bad and there are many aspects I'm missing dreadfully at the moment. Unfortunately the colleague I spent the most time with was the unkind one. Just the two of us in a relatively small space.

I've had lupus for 42 years - it was diagnosed just a few months before I got married. Over the years it has presented itself in various guises and as I've become older it has started to take more of a toll. Recently severe fatigue has been hard to manage. I have RA, pulmonary fibrosis, colonitis, slow GI motility to name a few. I'm also hypermobile and have dislocated my shoulder on several occasions. I also had a fall 2 or 3 years ago and managed to break the shoulder too, leaving me in permanent pain in my neck and shoulder.

I know I'm a lot better of than many people though.

Xx

[misty14 in reply to Nickym2301]

Hi nickym

So sorry you have so much to contend with your health!. I can relate to picking up lots of extra diagnoses over a number of years as I've been ill for 30 years and it takes its toll. Do also sympathise greatly with fatigue as I find it affects my life hugely and I wish there were more answers for it from the medics. It really does affect quality of life!. I hope you can lick your wounds and give yourself lots of TLC and feel better able to start this new chapter of your life soon. X

[Nickym2301 in reply to misty14]

Hi misty14

Thanks for your encouragement - it's comforting to know that people understand what I'm going through. We're all in the same boat to a greater or lesser degree aren't we?! Xx

[misty14 in reply to Nickym2301]

Sadly nickym we are but that s what makes this forum so fab!. There's always someone who can help / understand. It keeps me sane and I love how I can help others with my own experiences!. You may find you can help others in this way after having help yourself. Keep sharing I say!. X

[Lupusandmore3]

I feel you! I just had to give my career up as a doctor at the age of 48 which is about 20 years earlier than I expected. I've had to go on to disability. There are many issues for me surrounding being on disability. There is the loss of my profession which is a blow to both my pride and loss of my identity. I've spent 20 years as a physician helping people and I don't know who I am exactly without this framework. I've been educated to within an inch of my life and I don't know how to exist well without this Armature around me. I still spend hours every day reading medical literature and taking notes in the hopes that I will have a chance to write a scholarly article at some point. On top of that, now that I am disabled it means that I'm now poor when I was once well-off. I have two small children ages nine and 11 and I'm divorced from their father who is and extremely highly paid specialist physician. I'm not sure if you're in the UK or in the US but here in the United States the rules surrounding divorce are quite different. I have primary custody of my children which means they live with me most of the time. This means that they're extremely happy because they do not enjoy spending time with their father – he is an extremely controlling narcissistic individual with A great deal of emotional problems. However, because I was working at the time of her divorce and was a "high earner," there is almost nothing I can do to change this designation and increase the amount of child support I obtain from my ex-husband. In addition, I did not seek spousal support at the time of our divorce even though I qualified for it because I was afraid of his harassment. I made a deal with him at the time that I would waive spousal support for his payments of the children's private school tuition from kindergarten through 12th grade. Now that I am disabled it would've been in my best interest to have excepted the spousal support and use the public school system in our area which, in many locations, is excellent. I am thrilled that my children are getting a top-notch education but I much rather would have save the money for their college education and I have had enough to pay for groceries.

So my sympathies absolutely go out to. It takes a long time to become comfortable not working after a lifetime of being part of a defined workforce. I'm coming to the slow realization that those of us who are chronically ill and unable to work at traditional jobs making money need to structure our days in ways that are productive for us – of course this only applies to days when you're feeling well. Being productive mean something completely different when you have an auto immune disease. It may mean just being able to get up out of bed, take a shower, get dressed, and do a few errands around the house, and pick the kids up. Other days it may mean just reading and on some days it may mean writing, playing music, or even socializing and exercising, gently of course. If I could convince you not to feel bad about yourself I would but I can't. This is a journey that will take a long time. I am still in the throes of feeling terrible about myself and my diagnosis the curtain nearly 3 years ago. During this three years I threw myself back into work each Time I was just charge from the hospital and each time I failed miserably. As of this February, 2017, after a horrifying brush with lupus cerebritis, my doctors and I decided that this is the end of my career as we knew it. I stopped working then, applied for Social Security disability and the small amount of work provided privately funded disability and was quickly accepted. (Of course this was with the help of a legal team assisting me-the American way!)

I now have to wait for my benefits to start for another three months. And, I have to wait until February 2019 for my Medicare health benefits to pick up my Medical care. For the moment, on my meager salary I am paying $1300 out-of-pocket each month for my insurance deductible to Blue Cross Blue Shield of California. It's criminal but I need the level of insurance that they provide and this is the plan that my job had offered so I have elected to join you at despite the exorbitant price. I wish you well and I know that you will come to terms with your feelings of "uselessness."

You are far from useless. You are just at the very beginning of figuring out what your real purpose is in the universe.

[whisperit in reply to Lupusandmore3]

It's beginning to look as though we could easily make a whole new group for Lupies who are having to come to terms with being ex-health professionals (did you see happytulip's recent post?)! Not that I am suggesting it, but there is certainly a lot of fellow-feeling around here. I'm gradually weaning myself off the professional literature; luckily I have an excuse to replace it with academic papers on conservation and biodiversity as my daughter is about to start a Masters in that. Like I said before - whatever works...

x

PS despite any financial cost, it's always worth cutting as many ties as you can with controlling narcissists!

[webar4780]

Hi nickym2301,

I am sorry to hear of your on going struggles with health issues.

I wanted to add my experience, to the many wonderful comments you have already received. I hope in some small way, I have helped.

I believe, most of (us), struggle with symptoms of ill health, whilst working, until such a time, we just cannot go on.., sometimes, we listen to our body, other times, we push, and push, and push.... I pushed...

I worked extremely hard, in a wonderful job, as a registered nurse. Despite being very unwell, taking sick time, constantly pushing myself back to work too soon, I eventually retired, four years after retirement age!!!

Nowadays I have time to reflect. I can honestly say, I will live with regret that I did not leave work sooner.

Once retired, I collapsed within 3 months. GP sent for an ambulance, and I was 'blue lighted', to hospital. Suffice to say, I had zero quality of life for the next two years, whilst trying to make sense of my symptoms.

Even when, the director of nursing and HR, told me they would support early retirement, on ill health grounds, including getting early pension, I thought, (and refused to accept reality), I could fight autoimmune disease. Why? Because, autoimmune disease, is an invisible illness, colleagues (family and friends), always told me I looked well, and, because I loved my job! (I enjoyed my salary too). Alas, I stayed at work, for a staggering, eight years more!!! God knows how I struggled!

Once retired, like you, I was very lost. By now, not only diagnosed hypothyroidism (25yrs), but also, sjogrens, ?lupus, hemangiomas on liver, recurring prolapse discs, spinal issues,........... Thus, I am regularly, returning to the very place I worked. Though, taking the role of patient, no longer nurse.... How very hard, that was at first. Early days, I used to sob my heart out at home, after appointments. I hadn't got a clue who I was, what was happening to my body...

My husband, self employed, also at home a lot! So, I do understand. He had no skills to deal with autoimmune issues. Our relationship strained. I expected him to be there for me, to know what to do..... until, slowly, I realised he was also thrown into a new identity as a couple... I feared for our relationship.

So, what has changed? What would I say, today?

I have gone through the stages, (keibler-Ross, I believe wrote about them, describing grieving), of shock, disbelief, grief, anger, ... to, accepting.... all a necessary and beneficial journey, when coming to terms with loss. All normal responses. When we lose our identity, we are bound to grieve..

Today, I know I am not alone. This site HU is fantastic! BSSA is also fantastic, as a support network (we attend face to face meetings with other sjogren sufferers).... I pace myself, I no longer spend time with anyone or anything that saps my energy... I read, I listen, I learn from expert patients and great care providers.. I am not afraid to be me. The new me. Warts n all. Bad days come, bad days go. All is manageable. Worst days, I pop on here. Everyone understands. Friends for life, friends for advice, and friends for support. I can also phone BSSA helpline, and,or, phone a friend with sjogrens. I now raise awareness for Sjogrens.

Looking back, I can honestly say, this journey, all 3 years since leaving work, have, and do, teach me, so much about the world, other people, and myself.

Would I go back to work? I could, there is a desperate shortage of nurses, I could do as little as 5 hrs a week! lol. NO, I most DEFINITELY WOULD NOT go back to work! I have been able to let go...

Work no longer defines me, Autoimmune disease, does not define me, either. I'm happy as I am. I am excited about the future.

I wish you all the best as you grow in your identity. You may meet many new friends, and learn a lot more, than ever you would, staying within the workplace. I do hope so. I wish you and your dear hubby much luck.

[Nickym2301 in reply to webar4780]

I have read this and tears are streaming down my face. You have put in such beautiful words all the knotted confusion, pain and despair that rages inside me.

You have given me a glimmer of hope ... thank you.

Xx

[Kevin53]

This conversation really demonstrates the benefits of this platform. Well done. Best wishes Kevin

[Nickym2301 in reply to Kevin53]

Thank you Kevin53 xx