zella
Pearl Clutcher
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Post by zella on Feb 27, 2018 22:55:02 GMT
So I don't think I actually announced this here; if I did, please forgive me. My short term memory is atrocious. Last year I came to the realization that I couldn't work as a nurse (I'm an RN with a BSN), and that it was unlikely I'd ever be able to do so again. Even if my physical problems could be mostly improved with treatment, I would still have the memory problems and multiple cognitive deficits. For example I can no longer multitask. I cannot track things over time. I not only forget things once, but I may forget them many times in a row (particularly anything with a number). I lose things frequently, both around the house and even on my computer. All of these issues meant that I couldn't function as a nurse. I couldn't keep track of what I was supposed to do and when. I lost important paperwork frequently and would have to redo it. No matter how many times I checked my paperwork, I'd miss errors. I went from charting and documentation being one of my strong points, to not being able to document adequately in order to meet government requirements. When I lost my last job, I hoped it was just because I was so stressed (my sister had just died), but by last spring I knew these changes were likely permanent. Although I now have a diagnosis and am on treatment, my memory and cognitive deficits remain. In August I began the process of applying for disability, and I finished it in September. I received my first payment, which was back dated to August of 2016 I believe, in November of last year. I was absolutely floored, having fully expected to be turned down and have to fight for it. Instead my application was approved and very quickly. I don't get a lot of money as I've not worked extensively, but it's a comfort to me to have even a small amount of income. The other thing this did for me is validate that I'm really sick, and clearly multiple doctors also feel that working is not possible for me. That has been a huge relief. But at the same time, I'm coming to terms with this "new" me. I've never been robust, and I've had periods of my life when I've been very ill, but this is different. On top of the psychological issues, I do still deal with episodes of severe nausea with flushing, and also fatigue that can be intense. I've been sick for 3 weeks with an upper respiratory virus, and though I'm almost back to normal in terms of my sinuses and coughing, the fatigue is crushing. Even sitting upright for more than an hour or so exhausts me. And I've developed tachycardic episodes, which I've never had before. I see a doctor about this tomorrow, and in the meantime I'm trying to relax, relax, relax. It gets so frustrating. I truly can't do normal activities. Doing housework is pretty much impossible right now. I managed to do 2 loads of laundry yesterday, but I also needed IV fluids and IV medication for nausea. Today I'm trying to do one load. Going up and down the stairs is exhausting. I have no clue when, or even if, I'll get back to my baseline before this virus. So I'm struggling, but I'm also in small ways accepting this new normal. Occasionally I've said "I'm disabled," when someone has challenged me in a certain way. Of course my disability is invisible (well, except for my frequent limping due to arthritic changes in my hips). And many of us know that people have a tendency to judge disability status based only on what they see. I know that my body is capable of doing very, very little; if I push, I pay for it. I end up having a flare (terrible nausea and other symptoms). But it is so hard to look around and see so much that needs to be done and know that I can't do it. It's tough. I've been doing really well as far as my depression goes for the last two months or so. But this virus has got me down. It's just so frustrating. I'm so worried about my future. I'm only 55, but my body acts more like I'm 85. And I feel bad for my hubby, because I'm so useless. Mostly I just need to talk about this, vent. I really want to hear from others who also deal with these challenges, who've become disabled, who deal with invisible illnesses. How have you come to accept your new, limited life? How do you deal with guilt over the many things you can no longer do? Let's talk about all this. And thank you in advance.  |
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pridemom
Pearl Clutcher
Posts: 2,843
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Post by pridemom on Feb 27, 2018 23:00:21 GMT
I work full time, but if you use the ADA definition of disability, I have one. Because I have worked in disability advocacy, that doesn’t bother me. Up to 20-25% of people in the US meet the ADA definition, so you are not alone. Some of those people work, and some of them do not. I would consider you as taking early retirement, because it happened earlier than you wanted it to. Take a deep breath and focus on taking care of you.
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Post by kelbel827 on Feb 27, 2018 23:00:57 GMT
I've got nothing, except you owe no one explanations. Hell, if someone asks what you do, you are a nurse and are between jobs. Not a full lie!  Your concern is you and no one else! |
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Post by donna on Feb 27, 2018 23:17:56 GMT
Being disabled by cancer has been hard for me. I have always been a very independent, take charge person. Most days I just feel useless now because I can't do much of anything. I can do about 5-10 minutes of something at a time. I actually felt useful for a few minutes today because I picked up some prescriptions for my dh so that he would not have to do it after work.
One good thing about losing my hair and having to wear my special turban hats is that nobody questions me about being disabled.
I hope you start feeling better from this virus soon. Hugs
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Post by KiwiJo on Feb 27, 2018 23:23:51 GMT
Oh my goodness - I admire the way you have written about what’s going on and how you are dealing with it.
Well, except for the bit where you say “And I feel bad for my hubby, because I’m so useless.”
It’s so often about our own perceptions of ourselves, isn’t it; we second guess ourselves, blame and doubt ourselves. So I can absolutely see how being granted a Disability Benefit would be very validating.
I have arthritis in my knees and cannot walk far or stand for long. I blame it on my being overweight - if I could just lose weight, then everything would be ok. I forget that pretty well everyone in my Dad's family had severe arthritis, and Dad had both hips and both knees replaced even though he was never overweight in his life. People suggest that I apply for the card that would allow me to park in handicapped parking spaces, but I am too scared - they might tell me that I would fine if lost weight, that my arthritis isn’t ‘real’.
Dealing with guilt over things we can no longer do? Again, it is often our own perceptions that make us think we are ‘useless’; others around us don’t necessarily think so.
Take some of your rest and recovery time to think about how things could change to accommodate your limitations. Doing one load of laundry is a good start! We rearranged our kitchen a bit so that I can prepare meals much more easily - I now have somewhere where I can sit down while doing any prep work. What could be done to make things easier for you? Could you and your husband come up with a plan together? Having a definite plan of who does what can make a huge difference, even if the plan is very different to how th8ngs used to be. Consider everything that needs to happen in your house - write them all down. Then go through and find the things you can do - 1 load of laundry a day. Paying the bills. Dusting the downstairs rooms (1 room a week, if needs be). Loading and unloading the dishwasher........
And I would really encourage you to get a pretty notebook where you will record your small wins each day. Every time you notice that you did something, write it down. Every time you thought well of yourself, write it down. Every time something nice happens, write it down. Every time you don’t push yourself too hard, write it down. Every time you do someth8ng good for your own self-care, write it down. Then when times are tough, you can flick through your notebook and look at what you have accomplished.
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georgiapea
Drama Llama
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Post by georgiapea on Feb 27, 2018 23:34:24 GMT
I have Fibromyalgia, which is classified as a disabling condition, so I qualify for a HC parking placard. But I'm not nearly as bad as many others with this same condition, from the groups I've belonged to. And one of the things they suffer most from is lack of acceptance by family members. I worked till I was 77, but it was a cushy desk job, although my age made it difficult since I'd been working for years before computers were ever invented. I was woefully behind my 2 co-workers in grasping the computer stuff. I'm so thankful to finally be officially retired.
Then in Jan a year ago I fell, trashing my left knee, cracking a rib when my body landed on my wrist, making a mess of the wrist too, and multiple facial injuries when my face bounced on the cement. Subsequently a DVT blood clot formed and I ended up on total bed rest for 3.5 months, except for ultrasounds every 2 weeks. I was pushed into the hospital in a wheelchair for the first 3 months. Bedrest is a killer of one's muscles. I was like an understuffed rag doll when I was finally allowed to walk around. That was demoralizing, that I couldn't lift my foot 4 inches, and walking 10 feet had me looking for a place to lay down.
One of the things I firmly believe in is that no disability trumps another. When a woman with a shortened leg challenged my use of a bathroom handicap stall I stood my ground, standing in the stall doorway while I pulled my handicap placard from my purse and waved it in her face.
Today I worked, pulling vines from my long neglected gardens (house in foreclosure for 2 years) and cutting them into small pieces. I was amazed that I was able to continue doing this for over an hour. Small progresses are noticed and make me feel good.
I feel you are an amazing woman Zella, and I admire your coping with so much that has happened.
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Post by ntsf on Feb 27, 2018 23:34:45 GMT
my child can't work and is disabled. it can be hard cause everyone looks at a 28 yr old genius and have a hard time "knowing" that she has a disability and can't work. there should be no problem with it..but it can be so hard for her to function. dh is physically disabled.. he can bike and walk.. but if he is tired, he can't and he can't always go blocks.. he does use a cane so at least looks the part. he finally will get a wheelchair through the airport.
but good for you!!! you are doing what you should. hugs for you!!
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Post by M~ on Feb 28, 2018 0:25:44 GMT
I have RA and I am my own worst critic. I work full time as a lawyer and sometimes a flare up or pain come out of nowhere. I cut mys of some slack. I invest in pampering myself and don’t feel guilty about it. I learned to say no or not right now. This was the hardest lesson for me. I’ll get it done but not necessarily as fast as people want. Most of not all people,in my life totally get it. The people who judge me quite frankly, can go fuck themselves.
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Post by lovemybabes on Feb 28, 2018 0:34:10 GMT
I didn’t want to read and not comment.
My little one is on the spectrum, and struggles some. While I don’t have a disability, I see her struggle and wish so much that she didn’t have to.
I don’t have any advice, but I’m so sorry you are struggling. ((hugs))
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zella
Pearl Clutcher
Posts: 3,884
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Post by zella on Feb 28, 2018 0:44:54 GMT
You guys are so sweet! Thank you! donna, I'd say if you do ANYTHING that's a major win! Because you are completely justified in doing nothing other than keeping on living. I think of you often. KiwiJo, thank you for your sweet words, and the advice about a notebook is good. I actually have a planner that I use most weeks and I do decorate it, so I could start writing these things in there. georgiapea, your fall sounds awful! I fall over or fall out of bed at least a few times a year. So far I've only broken a rib once (when I fell onstage during a rehearsal). When I fall out of bed it's onto carpet, luckily. I might add that I'm awake when I do this. It's either because I'm reaching for something beside the bed and stretch too far, or because I'm perched too close to the edge and then slide off. Hubby is frequently telling me to move further onto the bed. I never learn!  Okay, off to hobble downstairs to move the laundry to the dryer and grab more water to drink. Our next house is going to be one story; that is a must! |
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Post by scrapmaven on Feb 28, 2018 0:56:35 GMT
I understand feeling useless, but I also understand the need for extra support and for letting the good stuff in, too. I fight that a lot. I will never feel good, again. I'll never be able to eat like a normal person and I'll always be fatigued. The bulk of my days are spent with my feet up in a recliner and I hate living like this. Nothing will ever make this fun or nice or good. However, I have learned to manage it and to live my life despite my limitations.
I strongly encourage therapy for this. Grief therapy also applies to grieving the way your life used to be. You have given up a fulfilling career and so many other things, but you are here and that means learning to make the best of what you have.
Keep your friendships close. Even when it takes all of my extra energy I try and meet my mom friends for a decaff. This week I'm just fried. So, my friends will come over. They've seen me in countless hospital gowns and they know that when they come here I'll be underneath a blanket in my lounge pants and no makeup. Who cares? We're friends and all I care about is the joy I feel when I'm with my loved ones. If you don't have friends nearby then find some. Go to a support group or a meetup group for a hobby or interest.
Zella, you and I both have dh's who are very supportive. My husband is my caretaker and my rock. He always encourages me and never complains or criticizes me. I'm so blessed. That in itself is huge. We have a rock on which to lean.
It is what it is! We are given what we're given and it's up to us to create the best life possible, despite our vast limitations. We have to re-create our lives and that's hard to do. I have so much creative energy and I hate living like this. So, I find joy in little things and so can you. Last Thursday my yds surprised me w/a visit home from college. That made my whole weekend. It's worth the exhaustion I feel today. It's all about balance. Take naps when you need them and try to do things for yourself when you're up to it. The world has not come to an end, it's just a lot different than the one you are used to.
You can do this, but you have to be loving w/yourself. Be gentle and kind. Treat yourself the way you would treat a best friend who was going through it. You would encourage your best friend to find little things that bring her joy. You'd remind her that her life is valuable and that people love and need her no matter how ill or disabled she might be. Be your own best friend, Zella.
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RosieKat
Drama Llama
PeaJect #12
Posts: 5,451
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Post by RosieKat on Feb 28, 2018 1:27:08 GMT
You can do this, but you have to be loving w/yourself. Be gentle and kind. Treat yourself the way you would treat a best friend who was going through it. You would encourage your best friend to find little things that bring her joy. You'd remind her that her life is valuable and that people love and need her no matter how ill or disabled she might be. Be your own best friend, Zella. I totally agree with this. And I want to say that I know this has already been a hard path and a lot of struggle, both physical and mental. You've been pretty open with us, and I'm so happy that you seem to be on the road to a better place. Yes, there will be struggles with your new identity - but that's where "person first" language might be important for you. You aren't a disabled person, you are a person who has a disability but also has so much more to her. Be gentle with yourself - sometimes you may need to push yourself, and sometimes you may need to huddle and regroup with yourself - and those are both OK. |
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Post by stampnscrap1128 on Feb 28, 2018 1:40:18 GMT
Zella, I linked this thread to my best friend (who is a Pea but rarely posts). She is going through a very similar situation. I told her to post here or private message you. I see what she goes through every day and my heart aches for you. Jenny uses the spoons analogy a lot and there are many days she goes through all her spoons before the morning is even finished. Sending you hugs, Zella!
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Post by jennybean1972 on Feb 28, 2018 1:40:43 GMT
Hi Zella,
I am a really private person, so it's hard for me to admit or post stuff about myself, my best friend shared this with me tonight. Thank you, I needed to read it, even if it hurt to read it. I have wanted to write something similar, but every single time I go to write it I break down writing it. I have written down a few things privately, but it just never really comes out.
Thank you for being so brave and writing this. I have been struggling with it and have been dealing with social security myself and I'm waiting on a decision from them as we speak.
Hugs to you Zella!!
Jenny Bean
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Deleted
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Jun 29, 2024 0:14:19 GMT
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Post by Deleted on Feb 28, 2018 2:34:02 GMT
Remember, you'll ALWAYS be a nurse!! No matter what--you EARNED that title, and it stays--no matter what.
I'm sorry for what you are going through!
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Post by dewryce on Feb 28, 2018 2:43:11 GMT
I'm struggling with this myself. Not so much the label as I don't work and haven't applied for benefits, but the knowledge of leading a different life than the one I had, and the one I gre up assuming I would always have. I don't really have any advice other than to mimic what other peas have said. Be gentle with yourself. You are not useless. How do they sometimes say it? Differently abled. Think of yourself as you would a loved one, I bet you are more kind and forgiving with them. Best wishes to you. Thank you for starting the thread it's good reading others' insights. Welcome to the pod jennybean1972 , hope to see you posting more! |
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Deleted
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Jun 29, 2024 0:14:19 GMT
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Post by Deleted on Feb 28, 2018 3:44:57 GMT
Oh my goodness - I admire the way you have written about what’s going on and how you are dealing with it. Well, except for the bit where you say “And I feel bad for my hubby, because I’m so useless.” It’s so often about our own perceptions of ourselves, isn’t it; we second guess ourselves, blame and doubt ourselves. So I can absolutely see how being granted a Disability Benefit would be very validating. I have arthritis in my knees and cannot walk far or stand for long. I blame it on my being overweight - if I could just lose weight, then everything would be ok. I forget that pretty well everyone in my Dad's family had severe arthritis, and Dad had both hips and both knees replaced even though he was never overweight in his life. P eople suggest that I apply for the card that would allow me to park in handicapped parking spaces, but I am too scared - they might tell me that I would fine if lost weight, that my arthritis isn’t ‘real’.
Dealing with guilt over things we can no longer do? Again, it is often our own perceptions that make us think we are ‘useless’; others around us don’t necessarily think so. Take some of your rest and recovery time to think about how things could change to accommodate your limitations. Doing one load of laundry is a good start! We rearranged our kitchen a bit so that I can prepare meals much more easily - I now have somewhere where I can sit down while doing any prep work. What could be done to make things easier for you? Could you and your husband come up with a plan together? Having a definite plan of who does what can make a huge difference, even if the plan is very different to how th8ngs used to be. Consider everything that needs to happen in your house - write them all down. Then go through and find the things you can do - 1 load of laundry a day. Paying the bills. Dusting the downstairs rooms (1 room a week, if needs be). Loading and unloading the dishwasher........ And I would really encourage you to get a pretty notebook where you will record your small wins each day. Every time you notice that you did something, write it down. Every time you thought well of yourself, write it down. Every time something nice happens, write it down. Every time you don’t push yourself too hard, write it down. Every time you do someth8ng good for your own self-care, write it down. Then when times are tough, you can flick through your notebook and look at what you have accomplished. I don't know how it works in NZ but in the USA it is your doctor that decides if you qualify or not. There is a one page form my doctor filled out about my medical condition, he signed it with his clinic info and sent it off to the state office. In about 3 weeks the hang card showed up in my mail box. |
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Post by Charlotte on Feb 28, 2018 3:57:55 GMT
And I have spent every day of my 42 years on this planet trying to not let my disability define me.
It is not a club that I would invite anybody to. I wish you luck in your new normal.
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Post by Lexica on Feb 28, 2018 4:01:32 GMT
Kudos to those of you who have a tough disability and are still working every day! I tried for a couple of years, but eventually just had to stop. I try hard not to judge myself, but it isn't easy. I also have fibromyalgia, and my sisters think it is made up, or they will claim they have it too, just to get under my skin. Is it any wonder I stopped communicating with them after Mom and Dad were both gone? There isn't any point in it. And one sister is a nurse. She should know better. But she swears it is a made up. I don't care what you want to name it, living with it, I know it is real. I had a tough time finding a medication that would work for me too. I was allergic to most of the typical fibro meds. My doctor finally found something that is for seizures, I think, and it works for a large part of my fibro symptoms and pain. I am really grateful that I have a great doctor that knows I am not making any of this crap up. I would be really low if he thought I was faking. I was so used to always going full steam from morning to night, and now I have to slow down so much. That is difficult when you are single, because everything relies on me. If I don't do it, it doesn't get done. Zella, I am proud of you and what all you have been through and that it hasn't made you crawl into a cave and stop trying to enjoy life. Same for all of you that are dealing with pain or disease or syndromes or whatever else is out there stealing the way we were. It isn't going to steal my joy though. I'm moving to a single story house away from all the negative people in my life. I plan to get out there and volunteer, join clubs, entertain, get back to walking, and maybe even hiking again. I am so tired of being in the house and packing boxes and having to nap. I am losing some weight that I put on with all of these darned pills they have me on. That feels great. Today I worked outside in the backyard for about 4 hours. I'm exhausted, but I did it. Even after it started raining, I kept going until I had a decent stopping point. I love being outside, and I think I am going to just go sit in the sunshine every day if I don't have enough energy to work out there. Just being outside fills me up with joy. I have RA and I am my own worst critic. I work full time as a lawyer and sometimes a flare up or pain come out of nowhere. I cut mys of some slack. I invest in pampering myself and don’t feel guilty about it. I learned to say no or not right now. This was the hardest lesson for me. I’ll get it done but not necessarily as fast as people want. Most of not all people,in my life totally get it. The people who judge me quite frankly, can go fuck themselves. I think I will borrow your attitude toward those that judge me. |
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Post by Delta Dawn on Feb 28, 2018 7:16:10 GMT
Remember, you'll ALWAYS be a nurse!! No matter what--you EARNED that title, and it stays--no matter what. I'm sorry for what you are going through! You don't stop being a nurse just like you don't stop being a lawyer or doctor or engineer or teacher or a hairdresser. You still have knowledge. Sure you can't remember 5 patients needs for meds and that the person in 2B needs a ventolin nebulizer etc. but you still have knowledge. You own the initials after your name and no one can take that away from you. If your husband had a cut on his finger you still know how to treat it. Your BFF calls you and says she has a stomachache what should she do? You, as a nurse, ask her what her symptoms are and tell her what you think. My BFF is a nurse, too, and I ask her stuff all the time. That is knowledge that no one can take away from you. You won't be a brain surgeon now (by the way, neither will I) and that's going to be ok. |
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Post by kkrenn on Feb 28, 2018 7:17:16 GMT
One thing that I've learned as I go through this same journey is I grieve in my own way and in my own time. There are days that I accept my situation and then days when I feel so low that (although very difficult to admit) I have tried to leave this earth. Of course I don't recommend that!
Realizing that I needed to grieve was really an important step and helped me. I struggle every day with trying to find a new normal and I hope that I eventually do, but until then my dh and my dd's are always there to tell me I'm ok. It may sound silly but having someone tell you that when you know you aren't just kinda makes everything else seem better.
I hope you have support either through family, friends, counselors, or therapists and if you don't please reach out. You can always pm me if you need to talk. And just in case you don't know it:
YOU ARE OKAY!
Hugs
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Post by nlwilkins on Feb 28, 2018 8:04:46 GMT
In 2003 I had to give up my career as a teacher. You think at first that this is OK that it is good to get away from the smart alek students and the non supportive admins. But, after a while you begin to realize that you miss it all and that you will never have that again. I actually grieved over losing the ability to teach. It took time and was a process of finding something to move on to. In fact my blog was named Moving ON. I had to redefine myself like you have said. But, not only do you need to redefine yourself, you have to learn to live with the new you and not only be content but happy with it. That takes a lot of time.
Little by little I found myself a new life. My husband has been so supportive. Then life dealt another blow and I ended up with a case of vertigo that is 24/7. After brain surgery that ended up being too late to prevent permanent damage, I again had to redefine myself and start the process all over again. This time it did not take as long. Just this past winter, that patch of hair that was shaved off finally reached the length of my other extra long hair and I took it as a sign that I have adjusted. The vertigo is still there and there are things I can't do and will never be able to do again. But, I don't see myself as disabled. I like to say I am just not 100%. Some days I am closer to 100% than others and I can never predict when the good days will happen.
Hubby has learned how to clean house, clean up the kitchen and even cook a meal or two. We eat out a lot more than we ever used to and the house is never quite up to the standards I used to have. But, I have a craft room now and it has become my salvation. I have learned so many new things. I actually can draw now, I paint, I sew, I journal, make cards, and the list goes on. These help to fulfill me in ways that I never knew possible. Just this winter two friends and I taught ourselves to needle tat. That was something I always wanted to do.
So while I am not disabled, my life has been turned upside down at least twice due to physical issues. So I hear you on how hard that is to deal with and how redefining ourselves is the first step. Kudos to you for your positive attitude in dealing with all you have dealt with. I am so amazed at how you are able to continue.
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Post by lesserknownpea on Feb 28, 2018 10:39:26 GMT
The key for me was to not value myself based on externals. I am enough. Period.
Some days I do things I feel good about. That’s great. But that’s not where my value comes from. Some days I do next to nothing. And I don’t value myself one bit less those days.
This is a new way of looking at myself, and I’ve worked very hard to get here.
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Post by jennybean1972 on Mar 2, 2018 0:33:55 GMT
Welcome to the pod jennybean1972 , hope to see you posting more! Thank you, I'm going to try! I tend to read a lot more than I post. Again thank you Zella for sharing your incredible story, it truly makes others out there also struggling not feel so alone. Jenny Bean |
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smcast
Drama Llama
Posts: 5,361
Location: MN
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Post by smcast on Mar 2, 2018 16:37:59 GMT
Remember, you'll ALWAYS be a nurse!! No matter what--you EARNED that title, and it stays--no matter what. I'm sorry for what you are going through! You don't stop being a nurse just like you don't stop being a lawyer or doctor or engineer or teacher or a hairdresser. You still have knowledge. Sure you can't remember 5 patients needs for meds and that the person in 2B needs a ventolin nebulizer etc. but you still have knowledge. You own the initials after your name and no one can take that away from you. If your husband had a cut on his finger you still know how to treat it. Your BFF calls you and says she has a stomachache what should she do? You, as a nurse, ask her what her symptoms are and tell her what you think. My BFF is a nurse, too, and I ask her stuff all the time. That is knowledge that no one can take away from you. You won't be a brain surgeon now (by the way, neither will I) and that's going to be ok. AND...think about how much knowledge you are sharing here with everyone just about things affecting you. Changing perspectives by sharing your feelings and experiences. This us a major life change that maybe has to be "grieved" to move forward and adapt into the new "you" so to speak. It's hard! You are not useless, by any means. |
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