Lupus Support Group
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Hi everyone, here's the backstory first...
I recently had a medication change due to complications with my lungs. (They think Methotrexate caused my lungs to almost crap out, so they switched me back to Plaquenil, hoping the lungs would ease. Its been a few months now and most of my symptoms are under control, but not quite.)
Sporadically I get arthritis flares, some lung issues, Raynaud's is going nuts right now with winter too. And the fatigue is insane. I can't make it through a day at work without almost falling asleep. on and off headaches, lupus fogs, skin issues. Its just enough physical symptoms that I don't feel well. Because I've had such a crappy year, I've been pretty depressed for 4 weeks now too.
I finally saw a counselor, and he thinks I should go on disability, just part time, so we cut my work hours down. He thinks that me pushing myself and working full time isn't letting my body accept the meds and heal itself.
I'm not sure if this is a good idea. I've never done the disability thing before and I'm scared that its a bad decision... (fyi- I'm in Canada and have good insurance and short term disability coverage, so that's not an issue).
The other thing is my iron is low, so I've been on supplements for 2 weeks so far. I know that has affected my energy levels... so now I'm thinking that if I give it a few more weeks, maybe my energy and depression will get better on its own...?
any ideas or opinions? I'm scared to take the disability step, especially if its unnecessary...
Thanks in advance. :)
I recently had a medication change due to complications with my lungs. (They think Methotrexate caused my lungs to almost crap out, so they switched me back to Plaquenil, hoping the lungs would ease. Its been a few months now and most of my symptoms are under control, but not quite.)
Sporadically I get arthritis flares, some lung issues, Raynaud's is going nuts right now with winter too. And the fatigue is insane. I can't make it through a day at work without almost falling asleep. on and off headaches, lupus fogs, skin issues. Its just enough physical symptoms that I don't feel well. Because I've had such a crappy year, I've been pretty depressed for 4 weeks now too.
I finally saw a counselor, and he thinks I should go on disability, just part time, so we cut my work hours down. He thinks that me pushing myself and working full time isn't letting my body accept the meds and heal itself.
I'm not sure if this is a good idea. I've never done the disability thing before and I'm scared that its a bad decision... (fyi- I'm in Canada and have good insurance and short term disability coverage, so that's not an issue).
The other thing is my iron is low, so I've been on supplements for 2 weeks so far. I know that has affected my energy levels... so now I'm thinking that if I give it a few more weeks, maybe my energy and depression will get better on its own...?
any ideas or opinions? I'm scared to take the disability step, especially if its unnecessary...
Thanks in advance. :)
For me, it was an issue of "giving up" - disability seemed a sort of concession to the illness, as if I was letting it win. When I examined this fear, I found that, for me, that really wasn't the case. It basically came down to this - even tho I'm filing for disability retirement from my job right now, it's a temporary move, intended to help me regain my health in the long term. In this way, I'm not giving up - I'm pushing through a very hard - personally, and socially - decision, because if I'm going to really find a way to live a good life despite this disease, I cannot keep subjecting myself to to the (for me) losing battle of stress and fatigue of continuing to push myself to work, and then not having any strength or energy to prepare nutritious meals, to exercise enough, which perpetuates a downward spiral. Stopping that, and creating an upward spiral of healing and sustainability in my life, had to include disability.
I hope this perspective helps a little. I encourage you to question what your reservations really are about taking this step, and decide for yourself what will be best for your health in the long term. I'm only 32, and I plan on living a long time, and having a good life with my husband, and accomplishing a lot of meaningful things. Weighing that against the social stigma, the paperwork, the fear of the unknown - well, it's still a difficult choice. But it was the right choice for me. Note - my paperwork is still pending. :)
I haven't worked in almost 2 years, I've also not had major organ involvement in 2 years...interesting.
The fatigue waxes and wanes, even now.
For me the hardest part is the $$$, I made a good living in Corporate Sales but at a huge physical cost. Now I am flat ass broke, but healthy.
I am very hopeful that disability will give me the freedom to be healthy and work with people, which I love.
It's good that you are investigating this while not being forced to, it gives you more say in the matter. Good luck!
I think my fear comes from the idea of "giving up" as well. and a little that I'm not strong enough to fight this. Looking back there are times in the last year that I should have been off work (hospitalizations, organ complications, etc) but I still worked. Makes my brain say, well you survived then, so why not now?
The truth is I'm just so tired. and tired of being tired. I don't want to do the appts any more, or waiting to see if the meds work... I want to feel better now. (The story of our lives huh?) A lot of frustration. I know the depression is a factor, but the fact that I have to sleep part way through the day or rely on sugar to keep me going... says a lot.
I also feel a little guilt if I do leave even part time. My job is integral to the business and I feel like they may not be able to handle it if I leave. I know, I know... no one is indispensable. and if I give them enough of a heads up, they can arrange some coverage. I'm just a worrier.
I can't talk to any supervisors until the new year, so until then I wait and see if the iron makes a difference. I really hate that this is happening during the Christmas season. but maybe its good cause i'll have some distractions.
Thanks again and happy holidays!
the last couple of days I've been feeling better emotionally. the physical exhaustion is still horrible. so I'm still not sure what to do. It was always more about the physical symptoms than the emotional ones. its just hard dealing with this all the time (as i'm sure you all know). it really wears on me, so sometimes I get depressed... it doesn't usually last too long. (I see a therapist that helps me with cognitive behavioural therapy and coming up with things I can do to manage the stress rather than meds).
I have a meeting with my supervisors on Monday to discuss what has been going on. and on Wednesday I have a follow up with one of my docs to perhaps start the process. we'll see what happens.