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Venting re how to face lack of ablities /need advice of coping stratgies??

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  • Mamabug
    replied
    Originally posted by jkforrest View Post
    Perhaps I did not ask the correct question last time. I actually meant those that that lost the ability to walk without a cane at all times or walker on in wheelchair. How did/do they defeat the "I'm not able to do that anymore" feelings?

    I guess I am feeling that if it really was from MS/Lost limb or other I would just accept it however because it's something no one can see or know but me it's like the invisible disease you know but "you look so good"!!!!!

    Will share next wk if it actually helps.
    Yeah. I guess I haven't been through that -- losing the ability to walk without a cane. But, it seems to me that, if we're using a mobility device of any kind (cane, walker, W/C), that we no longer "look so good". At that point, it becomes obvious that something is wrong. That's, actually, one of the benefits of using a cane for me. Now, when I walk awkwardly, I don't look drunk; I simply look like I have a disability. It's no longer invisible.

    For me, the bigger issue is what I am now unable to do. Like kick w soccer ball with my grandson. Go for a bike ride. I even feel somewhat anxious babysitting alone.

    I don't really care what people think. People are mostly nice, helpful and courteous.

    Leave a comment:


  • jkforrest
    replied
    to mama bug

    thanks for asking; went to my MS doc on moday. MS is about the same mainly heat (in the 90 s here) and fatigue with assorted other symptoms on different days just like adding spices to a meal lol However, appt at 11a. did not see me till 1:30 pm did not get home unless almost 6 as stop to help friend's family crisis issues!!!! Which are still going on. Wow bad bad bad level 9 pain even with taking meds 3 x per day and with the tens unit. I'm having the nerves burnt in a.m. Pls say a prayer this helps this times cause I truly am at my wits end.

    Perhaps I did not ask the correct question last time. I actually meant those that that lost the ability to walk without a cane at all times or walker on in wheelchair. How did/do they defeat the "I'm not able to do that anymore" feelings? I guess I am feeling that if it really was from MS/Lost limb or other I would just accept it however because it's something no one can see or know but me it's like the invisible disease you know but "you look so good"!!!!!

    Will share next wk if it actually helps.

    Leave a comment:


  • Mamabug
    replied
    How's your pain and fatigue? I'm glad you got the surgery done.

    Leave a comment:


  • KoKo
    replied
    Originally posted by jkforrest View Post
    I did have the surgery and going to have another one next Fri. Yah rah today is my bday babababaababab. ]Went to explore have stem cell (very very expensive) therapy. I was not a canidate due to the MS. DRATS
    Anyone is welcome to add thought here.............
    Hello jk

    Happy belated birthday.

    Fingers crossed for you that the surgeries are successful in eliminating your debilitating pain.

    Good luck.

    Take Care

    Leave a comment:


  • jkforrest
    replied
    tks for replies

    I did have the surgery and going to have another one next Fri. Yah rah today is my bday babababaababab. ]Went to explore have stem cell (very very expensive) therapy. I was not a canidate due to the MS. DRATS
    Anyone is welcome to add thought here.............

    Leave a comment:


  • KoKo
    replied
    Hi jk

    Gosh, never a dull moment in jk's world!

    Did you end up getting the procedure done on both sides?

    Has your pain subsided? Hope you're doing much better.

    Originally posted by jkforrest View Post
    Still have dilemma of how to decide what and how much to attempt to do. More importantly exactly where do I attempt to draw line at what is acceptable to expect myself to do or not do? Plus mostly how to I feel ok with my lack of new normal? Hate this new normal as there is nothing normal about it at all or second choice is that getting vintage sucks. It's clearly not for the faint of heart nor the weak and slackers. Help or good ideas need to be inserted here please/or a joke even just saying.
    The main idea that I'll offer to you, is to keep doing the activities that are reasonable and within your abilities, but take frequent rest breaks!

    It's not an easy habit to develop (especially when you're a hard worker and goal oriented) but it really does help.

    (Sorry, don't have a good joke, at this time)

    Take Care

    Leave a comment:


  • pennstater
    replied
    Sorry to hear about the surgery. The office seems to have some issues. Are you going thru with it there?

    As for how to cope with the new normal, it really is a mental battle. I try to remind myself that I have choices. Sometimes keeping up at home wins out, other times, I decide that I will live with some dust and meet a friend, shop, etc...

    I have found if I try to keep to a schedule to rotate thru chores, it works better. I have my great aunt's needlepoint from 1936. Monday was wash, Tuesday iron, etc.. I have to laugh - what is an iron? I also am grateful I don't have to do wash the way they did in 1936! I don't think I could.

    Leave a comment:


  • jkforrest
    replied
    well back to vent some more/however NEW stuff lol or not

    I did have the nerves burned off last Wed. lower lumbar. Note: actually went to the doc month prior to request they do BOTH sides at the same time hopefully elimination of most of pain at duh*same time*!!!!! Called radio frequency ablation.

    Imagine my surprise when I got to the pain clinic while waiting for procedure I was lying down on back across double wide sofa with tears streaming down my face and nurse says is there a problem here? Duh yes captain obvious!! No sound however enough moisture to water my vegetables and herbs at home just saying. I get back there and they say they are only doing one side. I remark oh no way it's supposed to be both. Reply well do you want to proceed. Well (yes however want what I ask for both sides (why did I bother to request both I think in my head). Oh no the insurance doesn't allow that I was told. Ha ha note to self and hubby-----they have no idea who they are dealing with.

    Aside here-------I leave and go to Ihop only to discover in my fury over not getting what I was expecting they had forgot to remove IV port and I was ever so proudly wearing that on arm for all to view. Told dh I could just remove myself. Oh no they need to remove--thus trip back for them to finish they job as I first expected.

    Promtply called their office and spoke with the nurse who claimed not to know who was responsible for the lack of clarity between insurance and their office. Then spoke to insurance company that stated they approved all items submitted with two pending. I requested they mail me proof of that statement and then changed my post op visit to next wk instead of next month. As I do want both sides done as close as possible if not same time to provide most pain relief as possible. This seems most logical to me. However, dh says the world is no longer logical at all. I am now a believer.

    They say in the instructions for post op no strenous for 48 hrs. Nurse calls next day says no strenuous for 7 days. I reflect. I search on line. I call for a second clarification to nurse and am still waiting for that return call as I write this. I gave up and did tag team mowing our tiny yard yesterday. We both came inside exhausted. I was unable to weed or plant nor pressure wash. WAAAAY too much over my ability with the heat and excercise movements lol. Even though I did use a cooling towel with ice water over my head and a brand new double facing fan pointed directly at my face. Such a good visual looks I remark when I pass by a mirror!! A huge help however still left me unable to complete what I wanted to get done.

    Yes did forget to report saga with getting someone to actually come out to FIX/declare death of our fridge/freezer!! Called and gave credit card to two different companies. No one showed nor called for two days. Found out later first one tech had car problems however didn't bother to let anyone know. Thank you for now having to decide what to throw out and what to keep or try to cook up lol. Great only $350 later and we could save some things however, still have to deal with that. See if it were not for bad luck I would have none at all just saying. That's how I roll. Just be greatful for no worse problems I'm thinking. Glass half full kinda gal she says.

    Vent over now trying to decide to cancel or not appt tomorrow to MS doc re fatigue when I know there is really nothing he can do so guess I'll save the co pay right?

    Still have dilemma of how to decide what and how much to attempt to do. More importantly exactly where do I attempt to draw line at what is acceptable to expect myself to do or not do? Plus mostly how to I feel ok with my lack of new normal? Hate this new normal as there is nothing normal about it at all or second choice is that getting vintage sucks. It's clearly not for the faint of heart nor the weak and slackers. Help or good ideas need to be inserted here please/or a joke even just saying.

    Leave a comment:


  • palmtree
    replied
    When you said you just made it to the kitchen and to the laundry I can tell you that has also become the scope of my physical participation in the world.

    I don’t know if this will help but when I make it to the kitchen to get something, I got there! Hurray! Now I just have to get back. Back safe. I can still do this. I still have clean laundry and I can still cook a burrito or wash off a bag of cherries. When I wanted a milkshake someone brought it to me. ME.

    This transition is constantly evolving but the focus of my life becomes less and less physical and more intellectual and spiritual. You have an amazing gift for writing. Your post could be a real grabber as the first chapter of a novel. We have so many more tools to express ourselves than the generations of MS sufferers before smartphones and iPads.

    This is not to say the cleanliness and order of our home environment doesn’t matter. It matters a lot. When things are clean and tidy my symptoms aren’t so bad.

    Money is always such a big factor. But I am willing to forgo all luxuries and live an austere life if I can get someone to come in and help me with those chores. At this point it has meant going into debt, which I do not enjoy, but managing the debt requires creativity, too.

    In some states, Medicaid has programs to pay for in home helpers that you choose. That part is all complicated.

    Leave a comment:


  • Mamabug
    replied
    I'm glad that you have a supportive spouse. Sorry for your difficult relationship with your daughters.

    I don't know that I have much advice. I also have a supportive spouse; currently. We've been through some pretty tough years, related to my MS, but things are good now. And, I'm fortunate to have two supportive adult children and two awesome little grandchildren.

    Regarding not being able to do what you used to do -- my only advice is to try to just let it go. I know; easier said than done. I allow, and ask for, help when I need it. We can afford to hire a housekeeper, which we've done, once every two weeks, for the past 10 years. I was always a messy person that didn't clean very frequently before that. I've found that I often do more since I have a housekeeper, rather than less. Now, I know that, in order for the house to be "cleaned", first it is my job to keep clutter picked up so the housekeeper doesn't just shuffle it around and clean around it.

    Regarding it not being done to your satisfaction, I've had a number of different housekeepers over the years. I used to find that I prefered advertising and hiring someone on my own (I used a college student for a few years). I preferred that to contracting with someone who already did housekeeping for a living because then, rather than them setting the rules (ie: "I don't do windows"), I set the rules. I gave them a list of what I wanted done and how I wanted it done. I've had my current housekeeper for more than 5 years and it's not an issue with him. His philosophy is that he is working for me, so he'll do what I want done. But, many who have their own business do not operate that way.

    But, if it's not in your budget, I guess that isn't an issue. Perhaps you can make yourself a weekly list and spread cleaning out, doing just small portions every day. Perhaps your list can include some things that your husband can do as well.

    Best wishes as you continue to navigate your MS journey.

    Leave a comment:


  • jkforrest
    replied
    attention new example of today

    Well thanks to those who responded as that was reassuring.

    Well I had worse 2 nitemares of my 71 yrs early this am as with the chronic insominia I didn't even try to sleep till after 3am and drugged myself at that.

    After waking, my body was emotionally and physically trashed!!!!!!! In first dream I was physically trying to hold up a house and involved trying to rescue my oldest from HER emotional and physical pain that she had gotten herself into by choosing poorly in some life decisions. Note: here is where dh said I always did that when he came along. That I had done too much and given to much and they were both not appreciative. More to the point: my shoulder that I got a steriod injection about 3 weeks ago was pressed so hard into the bed and so much pressure that my entire body was compressed and I was probably about 1 inch shorten and the FATIGUE was huge.

    I was so shook I took muscle relaxation meds and just tried to slow breath to relax as I was unable to even share with dh what I dreamed as I was too upset. I then beging to rehash what I needed and had planned to do in my head and realized I would not be able to do ANYTHING unless and until I could calm mysel, if I could even do that (which for quite some time thought that would not be possible today). The fatigue issue was a mountain to be climbed however, due to temp being less than 70 degrees (my personal drop over in a pile limit lol)I was willing to try and pick up shrub clippings and attempt some pressure washer (or actual spray cleaner using hose... then spray off till I get to back deck where I will need to actually USE the pressure washer).

    Took pain RX attached Tens unit to back and brought chair out of garage to sit in to spray off both sides of 4 shutters and front door prior to painting tomorrow or next day (see am pacing some).At that point the fatigue overtook me and I just had to leave the hose and chair by the frontdoor turned to off position. It was on a timer therefore not to worry it would shut off soon.

    Came in to write this and rest. Now when dh returns from errand I will attempt to try to move shutters to back of house onto deck. Not heavy just have issues walking due to pain. Guessing if I can finish front that will be all outside for the day.

    Received a very large new rug for the livingroom to place over the carpet (which actually needs to be replaced). This should do till this is affordable. Must remove several items in the middle of the room placed there that need to go to Goodwill (cleaned lower kitchen cabinets yesterday & day before). Just thinking about moving the items to the car for future deliver there causes me to be tired. This does not seem normal to me. Have I lost all reason? I realize I am not as fast as in the days of ole however even at a slow pace this makes me wonder if I can pull this off.

    Since it's currently left to me due to his stroke and wanting to not take any chances, I am wondering what if anything I could do differently. Or at the very least a way of planning better to set my time up for optimum benefits. Anys thoughts would be very very appreciated.

    Leave a comment:


  • KoKo
    replied
    Originally posted by jkforrest View Post
    Glad others are using the gratitude method!!If you notice I do list some of the things I am grateful for while DEALING with the rest of the life I'm currently living.
    Yes, you do express your gratitude very well!

    And I agree - we can do both - have gratitude, and at the same time try to figure out better strategies for dealing with our struggles.

    You certainly have a good deal of perseverance, jk.

    Take Care

    Leave a comment:


  • jkforrest
    replied
    Re

    Originally posted by KoKo View Post
    Hi jk

    For the things that I am unable to do anymore - I need to ask for help (mainly my two sisters and brothers-in-law). I'm very grateful for their help.

    For the things that I am able to do myself (safely) - I have to pace myself, take rest breaks, and keep cool.

    I can't do anything fast or hurriedly, so getting chores accomplished takes much longer for me than the average person, but still thankful for what I am able to do.

    Easy does it!

    Take Care
    Tks for sharing. Glad others are using the gratitude method!!If you notice I do list some of the things I am grateful for while DEALING with the rest of the life I'm currently living. I finally just read the spoon theory on the ms site. It captures very well the way I tend 2 plan my days or events lol. And yes it does make a difference when I wash my hair then putting makeup on adds plus decision if worth it due to outside temperatures decides if it stays on lol. Am still trying to figure out another way of dealing as not really working well currently. Not much bliss. Helpful ideas (insert here.

    Leave a comment:


  • KoKo
    replied
    Hi jk

    For the things that I am unable to do anymore - I need to ask for help (mainly my two sisters and brothers-in-law). I'm very grateful for their help.

    For the things that I am able to do myself (safely) - I have to pace myself, take rest breaks, and keep cool.

    I can't do anything fast or hurriedly, so getting chores accomplished takes much longer for me than the average person, but still thankful for what I am able to do.

    Easy does it!

    Take Care

    Leave a comment:


  • pennstater
    replied
    Sorry to hear about your husband. Really glad he is recovering so well.

    I have my days where I get so frustrated, as I can't do all that I want to, or much of anything at all. The at all days are usually when I pushed too hard the day or two before. But when feeling good, it is hard to stop. I also struggle with weakness in arms, numbness and pain.

    I find that when I start each day journalling 3 gratitude's, it truly helps me. By focusing on the positives, it usually tamps down my negative reactions.

    That being said, there are days I still get wound up. I have been working on adjusting my expectation. The house and garden aren't going to look like they used to. If I can accept that and accept that maybe other things are more important to focus my energy on, it makes my day better.

    Sorry about your kids. My husband's kids also drifted away. He has no idea why. I have never met them. It tears him apart - not knowing why. So I can empathize with your pain. All his family and friends say they don't understand it, as they had good relationship, he was really involved, etc.. They cut themselves out of all his family and friend's life. We can only pray that one day, they reach out.

    Leave a comment:

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