I have been holding on and holding on until I saw a new Rheumatologist last week. Now I just don't know if I can fake it anymore. I am mentally and physically exhausted. I am a housing services case manager for 20 formerly chronically homeless people with disabilities. Each person is dealing with so many things - health, no support system, no income for some, unresolved issues that led to their homelessness initially... For many of them, I am their only resource and only source of companionship. Part of my job is helping them deal with their illness and find outlets such as volunteering, classes, work, etc. Every day is something different and there is so much to remember and crisisis to deal with. It takes every last "spoon" I have to get through each day and I only work 32 hours a week. Not to mention fog that keeps causing me to make mistakes and being unable to communicate problems to my co-workers, supervisor, resources.
Then I have two little boys (2 and 4 years old) who depend on their momma to be their for them, to play with them, to take them "fun" places, to love them...
I can't take it anymore. Each Friday rolls around and I can barely function. My mom takes my boys Friday and Saturday because I just mentally and physically cannot deal anymore. I am robbing my children of their mom but I don't know if I am ready for disability... Heck, I haven't even been officially diagnosed yet! I could get a new, less stressful job but the finding the job, learning new tasks, losing insurance, and all that seems just too much.
I don't know what to do... Hopefully, the prednisone and plaquinel kicks in soon...
Our lives do change drastically with this disease, and we do go through a grieving process for the life that was, it takes awhile to accept and learn what our limitations are but in doing so you might find things you can do that you would have never thought of before. Give your meds a chance, and if you get too depressed, we are here but also don't be afraid to talk to your doc about this.
Wow - that is a lot to deal with! And thank you for doing what you do - being a mom, of course, and also working to help the most vulnerable and desperate people in our society. I know it doesn't pay much, so I hope you do find it rewarding and see the incredible value and kindness in what you do. :-)
But it is SUCH hard, stressful work - I cannot IMAGINE doing that work while dealing with active Lupus, AND a young family.
Sometimes, SOMEthing has got to give....the job, the house, the health...just make sure you are not damaging your health - it is more valuable to you and your family than the job or really anything else. It is sometimes easier to keep sacrificing yourself for everybody else - kids, boss, clients, etc...but you are not a limitless resource and you WILL run out at some point. Please, PLEASE don't do that to yourself. Make adjustments before you become gravely ill!
Have you discussed the situation with your doc? Maybe there are adjustments that can be made to your medications that will make a difference.
On the job, can you use some "tricks" to help with the fog/memory loss? Most of us have to deal with that, and have had to figure out some clever ways to cope...carrying around a notepad and pen to take notes about EVERYTHING, using a cellphone calendar/planner/memo app, etc. It can relieve a lot of stress just to write things down so you know you have a "memory back-up". It can take a while to establish new habits, but they're so helpful. I sometimes text or email stuff to myself just so I know I have reminders in writing.
And don't sweat it too much, the Friday and Saturdays the kids have with your mom....you are not "robbing them of their mom" - you are taking CARE of their mom (hey, SOMEbody has to do it!), and giving them the gift of time with their grandmother - which studies show is a very positive thing for kids. I don't know where our culture got this crazy idea that you can/should raise kids all by yourself, but it's true - IT TAKES A VILLAGE, even for completely HEALTHY parents!!!! Use your "village" however you need to.
We are always here to hear you vent, and know that we're sending you support via the "interwebs..."
The only way to stay as well as I can be is by taking time out and pacing myself. Lupus can knock you down gradually or very suddenly and unfortunately sometimes we are forced to stop and take time out.
The best person to spot the signs is you. No one will thank you for making yourself more poorly. I think that sounds way harsher than I mean it!
I have 5 kids (I'm sure some people will frown at that since I'm ill etc) but anyway, my kids are amazing. I'm sure that's due, in part, to Lupus. Weird I know, but they are so well adjusted, kind (from helping me/each other), realistic (from learning that there are limits to what I can do/provide), sensible (from learning to deal with things, under a watchful eye of course), responsible and independent (for the eldest ones). My kids have lovely relationships with their grandparents and look to lots of different people for different things.
I'm not explaining myself well...probably making it sound like I'm a bad parent...but I mean everyone lives with limits and the children learning this at a young age helps them deal with that in a realistic way as they get older. It's good for them not relying just on you and tho that's frustrating, it's how they will learn to be good grown ups. They won't doubt you love them based on their time with their grandma. It's a natural mothers instinct to provide for them and I really understand your frustration. Don't beat yourself up about it.
Take care of yourself whilst you still have the choice of affecting your health. Maybe it's time to take a break from work? I couldn't have raised my kids if I had another job too. Sometimes accepting disability can free you from the burden of becoming more poorly.
Sending you love and good vibes!
Thank you everyone for the wonderful responses! Your kind and supportive words mean a lot. I think I have been in a bit of a panic lately which isn't helping anything. I haven't even been officially diagnosed, may never have a definite diagnosis. The doctor is waiting for my labs before he starts any meds but he is leaning towards Plaquenil and low dose steroids.
Shanna - I am definitely grieving for a life I had as well as being terrified of the life I might have. That's where the panic is coming in. I have to realize that there is no definite course with lupus and I can only deal with what I am experiencing right now. No sense focusing on the worst when I need to just deal with the now. It's hard having two little ones though and not worry about the quality of life I can provide them long term. But I know, there is not point stressing... Thank you again for your kind words.
SleepyInSeattle - Thank you for your wonderful words of support. I have definitely found I have to work differently. I have to be extremely organized. I think real soon, I am going to have to try a new career. My people need the best help they can get and I don't know if I can provide that. I love my job and I am finally following my passion but it is just too much... Thanks for allowing me to vent :)
Jaynie - You sound like an awesome mom with well rounded children :) . You give me hope that my illness does not equate a troubled childhood for my little ones. It is hard to find that balance and allow myself to let go, but I know I can do it. I first need to realize this too shall pass; I haven't even begun to take meds yet so who knows how things will be then. I just need to hold out until then; things might significantly improve - who knows :) And if not, I need to expand my support network and know that it's okay to depend on others some to see me through the hard times. Thank you for showing me it is doable to raise wonderful children with the difficult disease.