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Mentally tired

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finallyoverit
finallyoverit Member Posts: 134

I totally get this f’ing diagnosis comes with all sorts of side effects. I can deal with the physical ones (what’s another pill or two? 🙄), but how do you deal with the mental aspect of it? The stress of stage iv is no joke. Looking to see if anyone finds relief from something I haven’t tried yet. The last couple of weeks at work have been hell and I’m super angry that I can’t just up and quit. I am single, so it’s only my salary paying for everything. I could go on SSDI but then what would I do for insurance as I’m waiting for Medicare. Just feels like a double whammy with stage iv and doing it all alone.


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  • nkb
    nkb Member Posts: 1,561
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    Finallyoverit- I get it- the mental part is really a nightmare. so dark at 2 am. I have run out of pills to treat it and will be starting IV chemo- just being back in the chemo chair for hours is so not a lifestyle. although it will be less lab and no daily pills...still. I try to manage by realizing that some people have it much worse than me for lots of reasons, some of which are not cancer- I have no idea if that is a healthy way to manage the mental parts. I pretty much keep it to myself since so many people have an unhelpful attitude to you when they find out you have cancer. I don't feel obligated to tell anyone.

    I don't know what to tell you about work/medicare/SSDI- it just sucks that if you are under 65 you have to wait 2 years to get Medicare- does your state have any plans? can your job provide anything? I took SS early since I wasn't sure how long I would live- I was on hubby's insurance until I qualified for Medicare so I didn't have that issue- it is a scary place to be once you are stage 4 though. I hope someone knows more about this- I think Candy 675 went through this - maybe she knows something. quitting work has it's own "transition" some of it money, but, all sorts of other messy psychological aspects.

    Hugs

  • candy-678
    candy-678 Member Posts: 4,143
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    Finallyoverit- I was diagnosed at the age of 47. I continued to work at my company-- not my "job", but another position in the company, as I could not do what my job entailed anymore-- for 2 years. I researched Short Term Disability with the company, and then decided to go that route. I had STD (short term disability), then LTD (long term disability) with the company. I applied for SSD (social security disability). I used COBRA for my health insurance for those 2 years until I could get Medicare. It was rough. But I had saved money in my account, since I have always been frugal with my money. I know that now I could not work. I have too much nausea and fatigue.

    Yes, this cancer really messes with your mind, mentally and emotionally. I still struggle with that daily. I too am alone--- no husband or children.

  • chicagoan
    chicagoan Member Posts: 1,005
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    Finallyoverit,

    Sorry you are feeling so stressed. Have you checked with HR to get a good handle on your benefits? Mine were much better than I knew. I had thought I would have to keep working but learned I was entitled to both short-term and long-term disability. The fortunate thing for me is that my company paid my health insurance until Medicare kicked in two years later. Perhaps you will have the same benefit. Otherwise, as Candy suggests, you can pay for Cobra for 18 months or go on Obama care but of course you want the best possible plan with cancer.

    For me, my stress levels plummeted once I stopped working. I think it made a big difference in me being able to survive. Under SSDI, once you are approved and on it, then you could resume working part-time if you need the money or want the structure. But you do have to completely stop working initially to be approved. It's a tough decision for those of us who are single and depending solely on ourselves.

    But I am really glad I stopped working soon after diagnosis. I feel like I have a 'life' that is more than work and cancer, I am able to have fun and do things that I enjoy. That makes a big difference mentally.

    Best wishes.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Finallyoverit,

    I completely understand that sense of just being tired. The mental part of this disease should deserve equal attention but is largely ignored through treatment. I’ve also found myself having times over the last few months when I am just tired. Tired of appointments, tired of treatment and tired of trying to hold it all together. It’s exhausting. I find it particularly hard when I wake in the night and feel the ache from the liver mets pressing on the capsule and the pain in my shoulder with numbness and tingling in my right arm, likely from spinal mets. It’s hard to escape this disease even for a few moments. Thankfully this sense of being fed up doesn’t last in my case (and I’m funny - I preferred IV chemo over Xeloda as I hate being tied to a schedule of when I can eat, when I have to take pills, etc. At least with IV chemo you go in and it’s done until the next infusion. 😊 )

    I also struggled with work and kept going for five years but finally had enough in April, stepping away completely. Like Chicagoan, it was probably the best decision I have ever made. It’s like a tremendous weight has been lifted from my shoulders knowing that I don’t have to keep pretending that I can do it all. I’m very fortunate in that I have a good benefits plan so I had six months of STD which transitioned to LTD and I continue to be covered by my extended health. In many ways I would like to simply retire (there is a certain hassle factor with LTD in terms of required paperwork and other hoops that you continuously have to jump through) but I would lose a lot of my health benefits so that’s a non-starter. I’m only 60 so have five years to go before they automatically retire me.

    I agree with others advice. Do some research to make sure you are clear on the benefits you are entitled to. Does your cancer centre have someone you can speak to about this? They often offer patient and family counseling, providing advice on financial issues. I hope you can find a way to ease the burden. Sending a virtual hug your way!

  • divinemrsm
    divinemrsm Member Posts: 6,199
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    finallyoverit, you’ve received good advice here in things to look into concerning medical coverage. On the mental health side, I have numerous things I do cope. Small things like make a music playlist on Spotify and listen to it and sing real loud when I want or dance around. Take a drive in the country. Listening to the radio in the car often lifts my spirits, too although I drive with it off at times. I keep a small notebook where I write quotes that mean something to me, and ideas on well-being. Journaling has helped me a lot, too. I also keep a few boards on Pinterest where I pin certain expressions or thoughts that speak to my frame of mind. I read memoirs of people who’ve gone through tough times which inspires me, and even famous people, many who’ve jumped through continuous hoops and suffered setbacks to get to where they are. Their perseverance inspires me.

    I like to keep my life simple, doing only the stuff that’s absolutely necessary. Less is more. I’ve gotten much better at creating boundaries and saying no to what I really don’t want to do. In place of those things, I add a little here or there of things I’d rather be doing like go to the pool, to line dance class, read, etc. I give myself things to look forward to like planning to visit my son, a concert, ordering something online and waiting for it to arrive, or a bigger splurge like a trip to NYC to see the Rockettes. Once a week, I try to do something new. This could be anything, big or small like try a new food, visit a new store, check out a new exercise class.

    All that said, sometimes I sit with my emotions and feel them. I acknowledge sadness, anger and melancholy are a part of my life. I’m not looking to be saturated with perky, happy, upbeat. I like fun stuff but I am also introspective. My life is more a balance of light and dark existing together.

    Tune into things in your life that are energy drains. See if you can make adjustments or eliminate them altogether. Sometimes we put unnecessary burdens on ourselves. Once I had a pile of photos on a chair that kept growing. I wanted to sort them and put them in albums but didn’t have time. Every time I looked at the pile I felt tired. When I realized it was draining my energy, I bought several pretty photo boxes and stored all the photos inside, an easy and quick fix. I like the boxes much better than albums and I eliminated an energy drain. Small steps like that can lift your spirits. Dealing with mbc is challenging at best. Be kind to yourself.




  • emac877
    emac877 Member Posts: 688
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    Finallyoverit,

    You and I sound like we are in similar situations. I'm also single and I need my salary and healthcare benefits to maintain my home and bills. Saying that, I am also struggling at work physically and I just don't have the same memory or mental acuity that I once did. On top of burnout I am just exhausted on a lot of levels. I think that's a normal experience for most of us with MBC.

    In terms of coping I think people shared a lot of good things here. I walk and go to the gym and I also enjoy playing music and reading. I have one really close friend that has been a lifeline for me and although my work is not easy, I do have several coworkers I enjoy and it offers me a social outlet.

    In terms of SSDI and paying for health benefits I second what others have suggested about really knowing your company's benefits and policies. I made an appointment with a social worker at my cancer center so see what options are out there and find out more about the process although I have doubts I can afford it right now. I was diagnosed at 41 and am now 45. I was not planning to retire this early. Depending on where you are, look into Medicaid. I think that will vary by state but in Oregon (where I am) when you go on SSDI you automatically qualify for Medicaid which will be your medical coverage until you can go on Medicare (or so my PCP tells me). Depending on income limits/state resources it may also put you in a position to qualify for grocery help and/or utilities help. That's all hearsay at this point for me. I hope to learn more after meeting with the social worker but I throw it out there in case it gives you an avenue or idea that might work for your situation.

  • finallyoverit
    finallyoverit Member Posts: 134
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    I thought I replied earlier, but the forum gremlins must have eaten it because I don’t see it now. Anyway, I was just thanking everyone for the input. Being heard and understood by those who stand in the same shoes is absolutely invaluable. I appreciate each one of you. Sending my love and absolute best wishes for good health to everyone

  • sondraf
    sondraf Member Posts: 1,628
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    Nothing much to add here as Im in a different/unique situation, but the base concern is the same. When i was off work for surgical recovery last winter I was smiling and happy and really enjoyed the time off (and milked it a few extra weeks thanks to generous employer benefits). The last 4-6 weeks have been tough and its not so much the work, its the politics. Its super fun to sit in increasing resilience workshops and listen to the 'kids' under the age of 30 talk about their (to me) trivial concerns (these same people pop up as 'menopause allies' like just stop everyone!). I dont need more resilience in my life I need less ambiguity!

    Getting educated, though, is the best and first step. Educated about what IS available to you - as others said, you may be surprised. At the very least it will give you a sense of boundaries of the possible and you can start to think through your potential tradeoffs to make it happen if you want it to. I intend to do this after the holidays.

    I thought there was a bill going through Congress to reduce the two year time gap? I wish it would be possible in certain circumstances at the very least (more than X number of years from retirement, single household, etc). Like everything else to do with BC it al revolves around the outdated notion that everyone is 60+ and married.

  • sondraf
    sondraf Member Posts: 1,628
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    Also - I see a lot of throwing in the towel posts due to mental fatigue all of a sudden. Is it the time of year/weather/general world events/time on treatment effect?

  • finallyoverit
    finallyoverit Member Posts: 134
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    I don’t think it’s time of year for me. Fall is actually my favorite season. I think I’m just tired of the scanxiety, all of the pills, all of the appointments, just all of it. I am struggling with side effects from a surgery about 5 years ago and I’m just sick of it all

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Interesting question Sondra. I actually wonder if part of the problem is due to the changes on this site. I feel like I have lost the community I once belonged to and the support that came with it. People are still posting but sporadically and many long time members have stepped away. It’s shocking to me how inactive the liver mets thread is. I can’t remember a time when days would go by without a post but now it’s common. Just a thought…..

  • moderators
    moderators Posts: 8,282
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    feel free to join our meetup today at 4pm for people with MBC, if you would like to talk with others. https://breastcancer-org.zoom.us/meeting/register/...


  • emac877
    emac877 Member Posts: 688
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    Sondra and Sadie - agreed. I know I hear about people wanting to give up and being "over it" pretty frequently and it does seem I hear it more often than I did. Not everyone is in the states but I also have to believe if you listen to news media here it often leaves me feeling worse. I appreciate the reminders for the MBC virtual groups but typically don't pull up the site until evening. I also agree that the site is not what it was. I know it is still transitioning through growing pains but the feeling of connection and the frequency of a lot of the pages is just not there any more. I believe that's a part of it too.


  • sadiesservant
    sadiesservant Member Posts: 1,875
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    On the issue of the virtual meetings, while I think it’s a lovely idea, they just didn’t work for me. The format is more of a round table check in rather than being focused on a subject. More like a virtual support group meeting which is completely understandable given the limited time and number of attendees. I know some really like the meet ups and attend all the time but for me it doesn’t take the place of the in depth discussions we used to have on these boards.

  • nkb
    nkb Member Posts: 1,561
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    More people I know have died and that exhausts me and saddens me deeply.

    so many challenges that add to the cancer - so many people are not doing well (with and without cancer) and when I catch up with them I am shocked at what they have been dealing with.

    Have a lovely day dear Sadie and everyone else