I thought I was doing good being home. I have been seeing my doctors doing every thing they say. Helping the grandkids with their home work doing what I can around the house. I no I caint work the way I am now. The nurses I work with called today to see how I was and they were trying to work things out to help me so I could come back to work. I worked on the detox unit most of the time and the max was 10 patients it was more mental stress than physical but when I was low of patients I has regular patients the others helped with the lifting and things they were great I always had the least sick patients I miss working so much I cried for an hour after they called.
I feel ya. It's hard. I watched a documentary on kindergarteners last night and began crying because I miss working so much. It's hard to "hurry up and wait" to feel better, see docs, etc. Wish I could say more, and how to deal better with it, but idk yet either. But I figure hearing you're not alone in missing work (normal life) might help some. :) Good luck.
I am in a different dilemma than you, but so understand that you want to be busy, contributing, doing what you used to do. I was a stay at home mom who did what I could while they were in school to make some much needed pocket change, and once the kids were grown, had plans, but have had to take a step back and really be truthful with myself about my limitations. I am glad your coworkers are being supportive, and in the past worked with you so you could work as much as possible. That is great!
I hope this graphic will help you know what we all go through at some point, and that you are not alone.
big hugs, Louise
Hi purplebutterfly,
I really feel for you mate as my working stopped when i was 18 and although i worked in a factory, meeting people then going out with them at weekends i looked forward to.
Well for the first 4yrs of being ill i was drugged out my mind but when i was in reality the more it drove me soft...some people can find it easy to adjust but it's been hard for me down the years i've overdosed and done other things not wanting to live...as i kept thinking what's the point of this lot.
I'm just lucky i have an hubby who' with me and cares because i know if i was on my own, my mind would go soft.
((Hugs to someone special)) xxx
Ohsoperplexed…I relate also. I was/am a stay at home mom. My youngest is 13. I had a part time djob working in the school district with people I really loved and had a motorcycle accident which then triggered this disease etc. I mourn the loss of what could have been…because I’m too tired or can’t concentrate or my hand isn’t steady enough anymore.
Now if I actually had a career that I had to walk away from…I’d probably be devastated. But that picture that is posted says it all. Maybe it’s not the end of something but the beginning of something else.
Sending hugs to you PurpleButterfly ... I have gone from working 60 hours a week, owning my own business, etc. The last three years have been exceedingly rough so have been working from home. Just gave my son the business (he worked with me) and am planning on applying for disability soon. My children are grown now; I, like Tez, have a wonderful husband and I just do what I can, when I can... I watch people whizz by me (makes me tired!) enjoying their lives; seeming to have a purpose I no longer have. I try to find happiness in smaller things; beauty in things I never noticed before and by helping others when I can. My thoughts are with you, Sweetie... Stay positive. Dee
Hi Purplebutterfly,
I have been on 2 sick leaves in the last 3 years and I found it very hard to be bored at home, even knowing I was too unwell to come back. Each time I came back too soon, still to sick but pushed myself to go back because I didn't want to be at home not working. It sounds like your employer is willing to work with you so you will likely be able to go back to work at some point. Maybe you can work part time instead of full time? Try to take advantage of the time to do something that you enjoy and is not too taxing on your body like read a book you have always wanted to, watch a whole TV series you missed while working, etc.
Meg
Purplebutterfly, Thank you for starting this discussion. This is a problem I have been having for a long time, I have trouble emotionally, accepting who I am now. The picture ohsoperplexed posted was very meaningful to me. I had a full time job up until we moved 7 years ago. We decided I would stay home for a while. My daughter was born and I decided I would go back when she started preschool. I was looking forward to working part time. I physically can't work part time now. I guess I am still grieving that "life I planned." Even the simple things are a challenge. I have a wonderful husband who accommodates me with Lupus. It seems he can accept the new me, but I can't. My kids are still young and I can no longer play the things they like outside. These things bother me deeply.
Reading these post have inspired me to work harder to accept the new me. Thank you ALL for sharing your experiences. I have had a good cry, which I think I needed.
Creekbank
Thank you all, the picture was beautiful.
I can totally relate to how you feel. This is my first year not start the new school year. I always looked forward to this time. I would think about what’s going on, the preparation for new students. I have broken down and cried because I am not doing what I so passionately loved. I watch my grandson once a week, because it’s all I can do with a 22 month old. I have had my LTD cut in half for 5.5 month which has lead me to have to sublease my apt. And move in with a friend because I have no family here except my daughters one who has a roommate and the other my grandson and his father. This has caused me to go into a flare. The girls are trying to help me distress with pedicures, facials, detoxing and lots of jokes. This is just another phase in our life, do to Lupus,that we have to reevaluate our worth and limitations and start from there. God may have another plan at this point that will be just as fulfill without the stress and exertion as previous. I just trust God and the plan He has for me. Volunteering at my church is the first step. Hang in there it’s okay to cry but don’t allow the past to consume our thoughts.
I completely understand what you're going through. I was a workaholic up until last year. Lupus effected my heart & I had to have heart surgery. My dr's then determined that I was disabled & unable to work or do a lot of the things I used to do. My entire lifestyle changed. I miss working terribly!!! Volunteering on my good days helps. Also, I went to a counselor for a while & that seemed to help with the anger & depression that I was feeling from my life changing so drastically. Best of luck & take care!!!
I too absolutely loved my job. But I couldn’t stay. I was a research scientist and could no longer manage being in the lab 9 hr-12 hr a day for 5 straight days every week. I was however, finishing up my masters degree and my boss/mentor was great at working around my needs to help me finish.
After that he gave me a much needed but very gentle kick out of the nest. I still speak with him by phone, email or text at least once a week. What my Master’s degree allowed me to do was teach at the collegiate level. I took the summer off to rest and play, read fiction finally after four years and pamper myself.
Four weeks ago I became Professor McCue. I teach 2hrs on Mon and Wed in the early afternoon, 3hrs on Tuesday and 1.5 hrs on Thursday. Fridays I get to pamper myself. And the shocking thing is that I live it! As most people, I didn’t want the change but its so much better for me mentally and physically.
I’d look into volunteer work. Many hospitals and long term care facilities would love to have volunteers with your experience. And it would be flexible for you in terms of lupus flares. There is always the possibility of teaching at vocational programs and associate degree programs. Take your time and look at all your options. You will find someplace to fit your life.
Good luck, Amy
I am a massage therapist for about 8 or 9 years and I had to resign in march due to the pain in my arms and hands. I had severe tendinitis in my forearms and the pain was unbearable. I been bartending part time because that’s all I know how to do. I been a bartender for 14 years. And that’s even hard on my body. But I just got fired a few weeks ago from one of my jobs. I was there 3 days a week and I’m having a hard time finding work. I have no experience with office type work so I’m pretty much stuck bartending right now. But I need work. I live alone and I’m suffering badly with my bills. I’m months behind in rent and about to have my electric and cable shut off. My gas was shut off in July and I can’t afford to turn it on. I’m very scared right now. I tried to apply for assistance and food stamps but had no luck with it. I don’t understand why I can’t get help when so many people get everything handed to them. It’s unfair. I don’t know what I’m gonna do. And the stress is making my lupus very bad right now. I can’t sleep. I’m so tired and in so much pain. I’m 36 years old. I been on my own since I was 23 and always was able to take care of myself. But since I got lupus my life went downhill and fast. I was diagnosed about 4 years ago and it has progressed rapidly. It scares me that I may not have a future and that the best years of my life are behind me. I may never get married or have kids. I don’t even know how long I’ll live if my lupus keeps progressing this quickly. I’m very scared and depressed. I’m sorry to vent or complain I just really have no support or anyone to talk to who understands. Anyway. I will pray for all of you. Good luck to u all. Hugs!!