Well for many, you find out when your ill how little help and support there is.
It’s tough mentally and emotionally but I have to try and put some normality back into my life. The option of not trying and being transferred to ESA with more so called health assessments is something I can not line myself up for.
My mental health is at an extreme low and I keep climbing up the side of my fish bowl that I’m trapped in and sliding straight back down when I make it to the edge of my bowl.
Who knows this may do me some good but frightened that I'm.no longer good enough. My employer has been amazing so I owe them to at least try.
Feels like I'm about to walk out on stage ”stars in their eyes” today I'm going to be Lisa yuppy flu autoimmunity. My immune disease will become very public for the first time, and I'm going to wear it with pride 😬
I pray to God that he allows me to win this battle and set my children a great example. Xx
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Lisalou19
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It really is tough mentally and physically. You are still not feeling okay at all. I hope your employer understands that you are forcing yourself back to work and that Dr. d Cruz is still doing blood tests, MRIs and asking for input from a urologist and a neurologist to get a full picture of what is going on with you. He hasn’t even had time to come up with a treatment plan for you yet. You are a hero going back to work so soon. I hope you get the support you need.
Physically and mentally not ready, but I'm 38 years old and the prospect of being sick for the rest of my days is pretty scary. I'm going to put my combat gear on a paddle on through 😬xx
You are very brave Lisa going back to work when your not well enough and still undergoing tests. Glad you have an understanding employer and I'm just wondering if you could do a phased return, part time at first if you didn't already?. Do they have an HR dept you could get support from?.
Fingers tightly crossed you manage Lisa, keep us posted how you get on and we're thinking of you. Xx
I'm with your kids Lisa, you'll do a fab job and if you can manage it will give you lots more confidence to deal with the doctors and for other things. Go girl. Xx
I hope it turns out ok. I actually believe getting back to work after my stroke but before I was finished with rehabilation has improved my health and quality of life. I interviewed for my present job with severe aphasia and very limited use af my right side, a limp and a permanent headache. I was shocked when I received an offer. I qualified and still do for disability but chose to try the position out. I applied for the job weeks before I had the stroke and thought about saying I was to unwell to go further in the process but because it was a position I really wanted in the school that I wanted I figured I would try.
Having something to get up and dressed for and push my self to live life in spite of my health disabilities has helped me focus so much less on how different my body felt and worked post stroke and the less I focused on my deficits the less I noticed them. The more I did mentally and physically the faster my words and strength came back. My limb, my fine motor difficulties and my persistent post stroke headache all began to improve.
It does help that I really love my new job but being engaged in normalcy taught me to realize and accept that although life is still harder and often more painful it can still be fulfilling. Distraction and acceptance of pain are two proven ways to treat and manage pain and illness. I hope you may experience a similar outcome when you return back to work as well. Take it one moment at a time and if it does not work out as positively as my reentering the work force has you can reassess your options again. Good luck.
I liked your description of the fish bowl as it expresses our illnesses so well. It amazing how are little people motivate us to be our best & it shows in them as they get older & reflects back at us to give us even more motivation to keep trying to be the best we can....
LL it hard work & can be an upward struggle, I am with you today wishing you well. I am still coming out at work about my illnesses & my boss said yesterday said in my appraisal she is amazed at my optimistic outlook, which helped because I struggle too be there... I gave her the employer lupus work info etc. Seems she read it. Take as much help they offer as possible... I am working now 33 hours a week & it took quite sometime to get to this level & thats my max now couldn't reach 37 need the later start in the am... One day at a time....
It sounds like you've been through a really tough time. Getting back to "reality/normality" after a life changing event is tough. I've been there, though not quite as seriously as you have.
Don't let the disease define you. You will find new ways of doing things, taking into account the effects of your autoimmune disease. Ask for help when you need it, don't be ashamed. Your employers sound like they have been really supportive and really value you as an employee. That will not have changed. I agree you can't hide from the disease and yes speak out if you feel you need to.
What you are doing is really brave. Facing your fears and giving it a shot. I really wish you all the best. Reading this has given me some inspiration, unconnected to lupus, but still an inspiration. Your words may just give someone else the courage to face their condition head on, rather than living in it's shadow.
I agree positive thinking can be difficult, especially when it seems like the odds are stacked against you. I must admit, I don't always follow my own advice but, if you think it will turn out bad, it usually does.
Go for it girl and I wish you every success x
I really hope you can do this, it shows great courage and strength. This time last year I was off sick from work awaiting diagnosis, I've worked since leaving school at 16 and have always been a loyal, hard working employee in all the jobs I've had. I came to the decision last July that I could no longer continue in my role as an out of hours school play worker. It was 10 hour days in school holidays with no breaks and involved a lot of outdoor activities in the heat or cold, neither of which I can tolerate well now. It was a horrible decision to make to leave a job I loved and my mental health has suffered as a result. I hope at some point I can return to some form of work once I feel more in control of this and receiving treatment as distraction and keeping busy are helpful. Well done and good luck.
I hear a lot about we need to accept the new us. I don't find this easy to do, especially on a bad day. But on a good day I think I can conquer the world. Its an emotional roller coaster but in time I think we find our paths. The responses and encouragement I gain from this site is so overwhelming . I couldn't do it without you guys xx
Go Lisalou! You are far from useless - you are an inspiration and your kids will be so proud of you. Well done for returning to work, take little steps at a time.
Lots of great advice from friends here, the only thing I can add is about looking after your mental health. I too regularly slipped down the inside of a glass vessel that I felt was lined with washing up liquid, when I was at my lowest point. I was referred to undertake CBT from our local mental health service which really helped. It also coincided at the time with a gentle increase in workload and I found myself to gradually ascend an upward spiral into a “better” place. A sense of self worth is good for the soul and sometimes doing a little work can help with that. Wishing you all the best, we’re cheering you on! Xx
Another positive comment. Thank you for taking the Time to comment. I start my CBT Therapy next week so to hear that this has helped you has just made me smile. You guys are amazing and such a great support network for me. Thank you xx
You are amazing! Well done you! I think it’s incredibly brave to try to go back, and also think you really don’t know how you will get on until you try, so I hope all goes much better than planned.
Throughout this whole year I have never taken a sick day (though been sent home a few times when became ill at work) because I’ve been too frightened that if I take time off work I will lose all my confidence to go back. Thankfully, like you, I have an amazing employer and amazing people at my side and I’m hoping I can get better soon for their sake as well as mine.
Lisalou19, You are doing such a brave thing and I will be hoping that it goes well for you. Whatever happens you’ll know you did give it a go. And by the way, I’m sure your children are proud of you anyway. Xx
I’ve been sick since I went to meet my boss on Thursday 🙄. I think maybe my anxiety wore me out and all these symptoms went crazy!!!! Still I look at this In a positive way, I should be well enough for my first full day on Wednesday xx
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