Re:since Pots, I've Metamorphosized(?) Into A Hermit

[friday]

I'm actually responding to the "hermit" post but I guess i wanted to know from eveyone who is stuck in the home. How do you deal with it?

I'm having a hard time because I've very isolated. I was always an introvert really so you'd think I wouldn't mind but I have had a past of depression. what that means is I have a history of people telling me how wrong it is that I stay alone and how i need to socailize and how just sitting around watchin tv is so bad.

It got to the point where I felt too guily to really become involved with a show or a book for those of you who read. I feel guilty if I just spend the day in bed.

I think I would have an easier time with this if I didnt' have that experience when I was younger. Back then I was a hermit of sorts . But I was totally okay with it until they; social workers etc. I ( was teen, so school made me see them) brainwashed me into thinkng I couldn't survive unless I was socailly active.

The thing is I 'm also wondeirng for you hermits out there. Do you have families? Husbands kids etc that live with you who keep you company?

Do you have friends that visit?

I live with my parents who are over 70 . my dad's just depressing. I used to have my brother as company but he died of a heart attack 4 years ago.

I miss him so much. I miss having someone to laugh with and just watch tv with. He used to take me out too so that I wouldn't have to drive.

I used to see my other brother and niece all of the time and go out with them. I miss that so much. I could take being alone a lot but I really miss them. I feel guilty that I can't go out with them anymore. They live an hour away so since i can't drive that far anymore I only see them once every few weeks, when they come over....lately it's been hard to see them because my niece is so full of energy that she wears me out. Then I feel bad that I can't be who i used to be with her.

anyway, All this is depressing me. which is why I sometimes have trouble going to boards like this. I read about how bad other people have got it and I feel doomed.

I'm trying to go to a day program for depression but it's hard t get there. Plus it's not for illness specifically.

I wish there were places or groups for people with chronic illness. So instead of handing out pamphelts on how to deal with depression. I could get hand outs on how to deal with being sick and stuck at home.

So how do you do it?

What gets you by? I know there's no magic answer. I'm just looking for hope that I can live with this and not be so miserable and anxious.

That I'm not alone.

Eveyone gives you advice on how to deal with it but they have no idea how it feels. There are so many support groups out there, but they are so specific. I dont' fit into any of them. except CFS and they only have one around here, once every month.

Anway,

after seeing the hermit post I had to ask how do you handle it?

Sue

[Guest dionna]

well i guess i didn't really think about that. i love being around people but i also grew up without many friends- i was always teased and made fun of... and i only started being noticed after i joined the marine corps. not many females there. i also met another POTS patient and we started dating and we are doing great. since neither of us really feel like doing much... we just lounge around. of course right now i am in a different state than him... so we text and talk a lot. the rest of the time i am surfing the net or watching tv. i think i just gradually got use to it. actually i got tired of passing out everywhere and all the ambulances got called. i didn't like that at all. so i guess i just found other inside things to do and of course my fishing later in the evening.

dionna

[futurehope]

How do I deal with being alone?

For one, I accept this as necessary. It just so happens I'm an introvert to begin with, so lack of company does not bother me, though it might if I were living alone.

I live with a husband and a chihuahua (dog) and two cats.

I see my mother (who lives about 4 miles away) about once a month. I dislike going over there to her place because I get symptomatic. We'll bring her over here for holidays and such.

I go to church services Sunday morning. And if I am able, I go to Sunday night and Wednesday night bible studies there. (Baptists tend to go to church 3 times/week). Over there I sometimes see a friend of mine that has chronic issues to deal with so we understand each other.

I sit near the back so I can leave anytime I need to. When it was too hot in the sanctuary last Sunday night, my friend and I went to the crying room to watch the pastor. It was cooler there. I could put my legs up on a chair and feel a bit better too.

I've also signed up for "restministries", a christian internet ministry for chronically ill people. They send me a daily devotional in the email. They have a quarterly magazine if you want to purchase it. And they help you start a "hopekeepers" group in your church, if you're so inclined. There's also interactive "chats".

So restministries is a group of people that really understands the needs of the chronically ill. You can join their forum.

Also, I'm very structured in how I spend my time. I start each day with bible reading (except I sometimes skip Saturday and Sunday) and prayer.

Mondays, I vacuum. Tuesdays, I clean the bathrooms and change the bed linens. Wednesdays, I do the laundry. Thursday and Fridays I'm "free". That's when I schedule doctors, yech! Saturdays I will accompany my husband to the airport if I feel up to it. He flies gliders.

Each day I do arm and stomach exercise. Alternate days, I do leg exercises. I walk the mall each day.

I do errands when I am able. All of the above is about all I can handle.

If I am feeling particularly able, I will go put in about 2 hours of volunteer work at the church. I help the group of "senior saints" ( I feel like a senior) put out mass mailings which get sent out to the community telling about our church.

That's about it for what my typical days look like. I operate at about 20% of what I used to.

I really try not to dwell on what I used to be able to do. That would depress me. I try and focus on why I feel blessed.

It's been and continues to be a major adjustment for sure, no doubt about it.

[dizzygirl]

Sue hi

well how i get thru it.. from day to day.. somedays are hard.. where i dont do anything.. and i am a permanent fixture in bed or the couch.. and I've accepted that that is how its going to be.. and if the "folks" around me do not accept that.. then that is there problem not mine.

My brother does try to come visit when he can.. and my freinds come see me for the most part now.. so i dont have to travel and do the hassel of getting sick and being totally drained by the time i get to them.

I for the most part and about 90% house bound.. i go out to go to the docs.. the hospital for fluids.. and an occasional trip to walmart for groceries and necessities.

When i can get out to the store I try to buy a few things that will "entertain" me.. I have a few hobbies of crochetting..and needlepoint work..(my best freind abby comes up a few times a month and we have "crocheting parties"..lol).. I love to read...and watch movies.. i also make quilts.. another hobby of mine... so i try to buy yarn and fabric things that i will need for "projects"

I've always had pots thru-out my life.. so i had to adapt to things (without even realizing it) that where quiet and that well i could do laying down...people who know and finally realize that me laying down alot is just a part of life now.. and for the most part they have canned the comments of "you need to do more" or try harder"...

as far as daily living goes.. (i ualify for home care but am not ready to accept that).. i try to do alittle bit at atime.. as it hard..but eventually gets done..

i dont quite exactly know how to word gettiing by. you just do...

afew things taht are a must for me to keep me connected tot he outside world are internet-cable- and unlimited long distance!!everybody i know is long distance!..

good luck dear i hope that you start feeling better soon...

hugs

dizz

[mom4cem]

During this past year I have been able to keep with my 2hr job in the school during lunch and do most of my normal things,,,bring the kids to school, walk up and get them etc. The past month or so I had some very good days, but it came to an end and I feel worse than before. I am afraid of becoming housebound, because even staying home I am symptomatic. Sitting, standing doing backflips,,all does the same and feels the same.

I guess it is hard to not get or be depressed when certain parts of your life are put on hold. Hopefully these are just setbacks and one day we will all be back to our "functional" point where we can be out there doing the things we once did even if only in moderation.

I don't even expalin it to friends because they have no idea what dysautonmia is. If you say tachycardia, they may know but still don't understand. Mostly I will get oh, anxiety. You need to relax.. Baby, all the relaxing in the world does not stop the tachycardia from coming. They don't get that and never will. You have to be in someone else shoes to understand but I don't wish any part of this on anyone.

I have friends,go out when I am able and try to keep up a good front. Some days are better some not. I try to keep myself together for my kids. They still need to go to school, be picked up etc. But like I said neither friends nor family really understand or know what is going on.

Hang in there, better days are ahead no matter how far away they seem. You always have the forum family to turn to.

[nadine]

Sue-

I was wondering how old your niece is? My sister and I are also very close and I am sorry about the loss of your brother, that must be very difficult.

I was wondering if there was something you could do to stay connected with your niece when you can't see her. My sister lives approx. 3 hours away and we talk weekly by phone and chat by email. She has a 4 yr old son who I miss dearly and it kills me, because when I first became ill with CFIDS (many years ago) she was there for me. She cared for my then 2 yr old on many weekends and she is basically a single parent, so I wish I could do more. Some things for suggestions- she sends video or dvd- one hopefully coming today of his preschool play and awards, him riding his "big boy" bike and just talking on video, etc. She has also sent cards that were lovely and I do on occasion as well, when I can get one.

Wondering if doing a scrapbook of your brother for your niece, might be something special for both of you. I am not very crafty, but I feel it doesn't have to be super fancy. Just memories. I lost my father at a very young age- 4 and have no memories, I love anything that was given to me and hearing stories from family. Maybe you could enter some memories for her as well. Just some thoughts.

Take care and hang in there

[Eillyre]

Hi Sue.

Thanks for sharing your post with us. I can relate to a number of things that you mentioned. I?m so sorry about your brother ? mine are so special to me, I know I would miss them terribly if they were gone.

I have always been a shy person, but became even more so when we returned from Africa and I had a terrible time adjusting to the cruel kids in our neighbourhood. Just as I was really opening up more socially, I began having trouble with POTS & CFS symptoms which landed me a permanent spot on my parents? couch for next year.

The friends that I did have were in college or just beginning their careers (outside of NJ, of course!). I was too sick to attend church (which was one of my largest social connections) or leave the house. The other people living with me (my parents and one of my brothers) all worked during the day. It was me and our dog and God. I did have some visitors from church once a week or two, but frankly I was so worn out by having people come that I tended to prefer being by myself. I spoke infrequently on the phone with my two best friends because I had so many cognitive problems that even a 10-minute call took me a number of days to recover from.

I admit also that I dreaded visits from my brother & his wife & two girls (only twice a year, but it took me two months to recover from each visit). My nieces are dear girls but as super-active 2- and 4-year olds, they were extremely wearing. I felt guilty about not wanting them here, but made a set of ?self guidelines? that have allowed me to enjoy their visits and keep me in the status of a very fun aunt.

I have coped, and my health has been slowly improving over the last year since my trip to Mayo. My faith is what really sustained me and continues to so, but there are a number of things that I did during that ?hermit? stage to help get me through:

1) I avoided things that would make me feel discouraged. I had my mom remove anything dance-related from my room (it made me think of what I couldn?t do anymore). I didn?t watch dance performances or sports on TV for the same reason. I stopped listening to audio lectures because even after listening to a short segment 5 times I couldn?t remember what the lecturer had said (very disheartening! ).

2) I found something that I could do and set a goal doing it. I was able to look at flower catalogues (the pictures were beautiful and the amount of reading involved was minimal) and so I made designing a flower bed for our front yard a goal. It was a very small garden space, so the size of it was not overwhelming ? it was a goal that I could certainly complete.

3) I focused on my limitations as a puzzle to solve, not as limitations. I spent several years as a ballet dancer learning how to train my body to do what I wanted it to ? it was a constant, daily-changing puzzle of how to use different muscles to accomplish a goal. Learning to live with my symptoms was a new challenge yet similar in some ways ? it was (and is!) a constant, daily-changing puzzle of how to accomplish certain tasks without fainting or over-tiring myself. It was actually exciting concocting ways to get clothes out of the washer and dryer without keeling over. I gradually learned what some of my consistent triggers were and devised ways around them. Make it a game and revel in your cleverness!

4) I did what I could. I could fold clothes while on the couch. I had to take rest breaks of course, but eventually I would finish. As no one else was particularly fond of folding clothes, it was a simple but much-appreciated accomplishment. I did not watch TV often on purpose, but when I did, I chose shows that would teach me something (Discovery, History Channel, Animal Planet, Home & Garden TV, etc.) or give me something to think about (Jane Austen films are a favourite!). I would try to find at least one new idea or fact that I could share with my parents at dinner that evening ? remembering what it was became the hard part!

5) I listened to lots of music! I listened to music that would take my mind off to the quiet mountain villages of Japan, the vast dusty savannas of Africa, the boisterous crowds of Parisian caf?s, the whirling excitement of a Mexican fiesta ? all the places I wanted to visit in person but couldn?t at the time. I listen to soothing music when I felt too tired to even breathe. If I was feeling up to it, I would watch old Fred Astaire movies and bounce around a little (lying down) to the jolly music.

6) I communicated with friends primarily through e-mail. It was less taxing on me as I could save my work and return to it at my own time, and it simply felt better for me because I didn?t have to toil over a conversation hindered by major brain fog . I explained my dilemmas to my friends so that they would understand why I could not keep up with their streams of e-mails and at times I made sure I just sent a brief e-mail forwarded to each of them explaining that I was in ?recovery mode? and would not be writing for another two weeks or so. My dearest friends took to this just fine and have done their best to keep in touch even when I couldn?t. Some who were not so close have sort of drifted away, but I don?t try to blame myself as I didn?t have the energy to keep up daily communication. I?ve done what I could and the friendship I enjoy with my closest amis is more than adequate compensation. They visit or talk on the telephone every once in a while, but mostly we e-mail with a special surprise snail-mail here and there. One does not need an extensive social network to get through chronic illness well-adjusted, no matter what the doctor says. I have found my small but very supportive one perfectly adequate for my emotional needs while allowing me the space and time to recover.

Perhaps there is a retired neighbour who?d like to talk with you, or people in the community who would look forward to teaching you something or learning a skill from you (the department of social services for your township might be worth a try). Maybe a nearby church has people who enjoy visiting/driving shut-ins ? a dear friends of mine met a delightful 88-year-old widow that way and now thinks of her as his own grandmother.

7) I have exercised each day and learned to pace myself. My cardiologist insisted that I walk around the block everyday so I wouldn?t ?become de-conditioned.? I understand what her concern was, but it was a totally unrealistic and destructive amount to expect from my poor body at the time. After a disastrous start on her regimen and a month of recovering from it , I took my own approach to exercise.

For several months it was just flexing & pointing my feet while lying on the couch to work my calf muscles and keep my feet flexible and articulate. Then I progressed to walking around the living room once before lying down again. I stretched when I could muster enough energy for it (splits on the walls was definitely out of the question until I started Mestinon!). Eventually I graduated to walking down the driveway or circuits through different rooms in the house. If I was totally exhausted afterwards, I knew I had done too much. If I was just a bit worn out, I would do a little less for the rest of the week and then gradually build back up again. As a CFS patient, you are probably aware of pacing specifics, so I won?t go into it in detail here. I did keep a list of what exercise I did each day to keep me from over-doing (the old bank withdrawal and deposit model) and as a reminder of how much more I had accomplished since I began (very comforting on the inevitable ?discouraged day?).

The exercise was good for my body, stimulating for my mind, and refreshing for my heart.

8) I tried to spend some time outdoors each day. This did not always happen, but I did make an effort to get fresh air and a little sun; if I couldn?t get out, I tried to lie in a ?sun spot? like a cat with an open window nearby. Not only did it give me something different to see, but it made me feel better as well. I found myself becoming very sad and unproductive and drawn to bright lamps on rainy or overcast days even though I had no previous history of Seasonal Affective Disorder. I eventually came across and article about the chronically ill that stated that a large percentage of chronically ill people do not get enough sunlight (because they?re lying indoors) which can lead them to feel more discouraged and sad and less energetic. Days that I spent a little time outside, I tended to feel happier and accomplish more. On rainy days and during the winter, I used a lightbox borrowed from my mom?s boss ? it made a tremendous difference. It was astonishing how much more productive I was! It may not be a solution for everyone, but it seems clear that my brain was starved for bright sunlight after spending so many months indoors. Sometimes I just lay out on a blanket in the shade or on our glider. Other times I would make planting 3 petunia plants my goal for the day. When I got tired, I just lay in the grass until I was rested enough to try again.

9) I used my time to think. I purposely spent more time thinking and less time watching TV. I thought about things that I did well or knew about that I could share with other people. I thought about problems that I saw in my character or attitude that I wanted to change. I thought about ways to improve our closet organization or to make our living room more welcoming. I thought about ways to improve my schedule or fix problems in my treatment plan that I was noticing. I thought about activities my sister could do with her kindergarten class on a certain topic. I concocted low-energy activities I could do when my nieces came (they loved to sit in my lap and look at pictures of baby animals I found on the Internet).

I thought about ways to make each member of the house feel more special. The inspiration came from a passage I read in Jane Austen?s novel, Pride and Prejudice, in which Jane and Lizzy have just come home from their respective holidays. ?But their father?was really glad to see them; he had felt their importance in the family circle.? I began to wonder what my importance was in our family circle and what I could do from the couch to be a comfort to my parents and siblings. One thing I began to do was to make sure the house was well-lit in the evening and that I was lying on the couch alert enough that I could greet people coming home from work and cheerfully ask them about their day. They loved it! One night I was actually in the bathroom when my dad came home instead of on the couch. His first question: a surprised ?Where?s Angela??

10) I did what I could to focus on other people?s needs as well as my own. I wrote letters to troops overseas (they loved it!). I helped put stickers on kindergarten papers my sister brought home to be graded. I previewed videos for my brother?s 5th grade science classes. I matched my dad?s socks. I asked my mom about how her day was at work when she came home. I read and praised a dear friend?s college essay. I helped my younger brother study for a test he was taking. I sent a card and some drawings to my nieces. I wrote get well cards to people in the church who were sick or recently injured. I tried my best to help answer questions of newbies to the Dysautonomia Forum. Of course, all of this require frequent rest breaks and sometimes took multiple days to finish, but the happiness it produced was well worth the effort.

11) I took up new hobbies. I began calligraphy and embroidery. I learned a great deal about gardening from looking at catalogues and reading books from the library. Find something that you can pick up and put down as you need to and work on excelling in that area.

12) I celebrated the small steps. My mom and I had little celebrations when we finished putting together my medical portfolio. My sister brought a movie over and some microwave popcorn to celebrate a Friday night with enough energy to watch something. I requested a lasagna dinner when I was able to wash a sink of dishes again (after the dishes, I wasn?t in any shape to make the lasagna!). On one very good day I had enough energy to make a quick batch of oatmeal muffins my mom and I could enjoy as an afternoon snack ? a nice surprise for her when she came back from work. One day I simply wore a sweater that I saved for special occasions to celebrate the day I took a shower without feeling woozy. If you can?t go out to celebrations, try to bring them to you.

13) I never spent an entire day in my pajamas. Getting out of bed used to be a 3 hour process (after which I would promptly drop to the floor to avoid fainting!). I would then have to rest for an hour or so before attempting to change out of my pajamas. However, I did take the effort to change because I made me feel more like a normal person and made me feel more motivated somehow. I would pretend that I was getting dressed to go to biology class (a.k.a. lying on the couch watching Discovery Channel) or for my outing to the NY Botanical Gardens (also known as lying on the couch looking at the latest Spring Hill catalogue). Do what you can to keep some form of routine, allowing yourself enough flexibility to accommodate fluctuations in your symptoms.

14) I laughed and tried to surround myself with beautiful things. I made jokes (even to my deaf dog) while lying on the kitchen floor and I would chuckle over crazy spellings I made when trying to type out e-mails (I don?t know how many weird variations of my own name I found when editing my posts ). I had my mom pick up books at the library about art and gardening and animals ? even if I couldn?t read the book I could still enjoy the gorgeous paintings and photographs. I made sure there was a pretty tablecloth on the table when we ate or a lovely little scented candle near the couch to watch and smell. Find things that make you and the people around you happy.

As my health improves, I?ve started walking around the block each day with a neighbour who is teaching me to speak Spanish. I know not everyone improves, but a lot of us do. The unfortunate thing about forums dedicated to particular illnesses is that most people who post on them frequently are still ill enough that they need to post frequently. I suspect the majority of us who do experience significant improvement in symptoms tend to spend less time posting because we are trying to reintegrate into other activities. I know I don?t post nearly as much as I used to because the on-line classes I take and language study require so much of my energy that I don?t have much left for other things yet. Please don?t let it discourage you. If a venting post is going to make you feel worse one night, I recommend not reading it. Shield yourself from whatever will pull you further down. If greeting people or answering questions in your ?area of specialty? will make you feel better, devote energy to those posts.

You mentioned feeling too guilty to get involved in a book or show. I would really encourage you to take a very close look at where that guilt is stemming from so that you can free yourself from it. There is so much in this world that we can enjoy and contribute even though we are hampered by chronic illness. We experience a whole new side of life because we have chronic illnesses. One of my closest friends is a student at Princeton University. He says that I?ve self-educated myself better through library books, web articles, tv, and music than a number of his classmates have after four years at the university. He and several other people have taken such encouragement from seeing me (reading about me, that is!) work through these illnesses. I have had requests from a number of people to keep going on my e-mails because they look forward to each ?edition? so much ? it bolsters their own spirits and encourages them as they try to face their own non-health-related struggles.

I don?t pretend to be a perfect person nor am I a perennial ?Susie Sunshine.? I have had many discouraged days, wept many heart-broken tears, and dodged acquaintances in public places on occasion to avoid having to answer that dreaded question of ?And what are you doing now?? (It?s true!) I used to not answer the phone so I wouldn?t have to talk to anyone. It takes time and a lot of thought to adjust to our conditions. My world revolved around dance and helping people until I found myself flat in bed barely able to take care of myself. It took a lot of time to work out my frustrations and feelings of inferiority. I had to adjust personal expectations and ?re-carve? my identity. I?m still working through things, but that?s just part of life, whether one is ill or not. Life for anyone requires change and adjustment and thought and ?bouncing back.? We do have some difficult physical issues to work through and live with ? I?m not about to dismiss POTS or CFS as minor considerations ? but we can live with them, many of us can recover at least partially from some of them, and all of us can find joy and purpose in our lives. I?m one of the happiest people I know. Don?t give up.

Please feel free to PM me if you ever want to talk! I love to talk (in case you hadn?t noticed from the length of my post! I?m sure to be banned one of these days for taking up so much room on the board!)

With love, a hug, and a smile,

Angela

I love your scrapbook idea, Nadine! Wonderful thought!

Angela

[nadine]

First- SUE

I think I may have posted in error in regards to your niece?? I believe it was not your niece's dad that had the heart attack?? I am sorry about that, ? it was her uncle. I still think a scrapbook, would be great but a focus for family memories, so sorry if I misunderstood. I thought it may be healing for you in some way-personal choice about that- or you could do some other scrapbook topic.

Angela-

You are one amazing 22 yr. old!!! I loved your post and will save it- anyone could use your ideas for a variety of reasons. Your friend was right about your self education!!

[futurehope]

Eillyre,

Thanks for taking the time to show us all how to live productive happy lives despite our limitations. God bless you for your generous giving spirit.

(And, on a different subject, how did you get all the colors into your post? I've been trying. It really helps when reading it. I tried changing the color while composing the message and it didn't work?)

[Eillyre]

Thanks, Nadine & Futurehope!

Future -- To colour your writing, first highlight the desired text with you mouse (to highlight, hold the left mouse button down at the start of your text, then drag the cursor down to the end of the text you want highlighted, still holding the left mouse button down. Release the left button once you've reached the desired end of your text.)

Next, look to the right of the "Clickable Smilies" box, which is located at the left of this sentence, for a white drop-down box that says "Font." Under the drop-down box is a toolbar with buttons. The 5th button to the right has an uppercase letter "A" with a black underline. If you click on the underlined "A," it will offer you a large palette of colours. Click on the colour you want your text to appear in.

You will not see an immediate change in colour. Don't be concerned, however. The computer inserted a code between brackets at the very start and very end of your highlighted text indicating which colour you chose. If you want to preview your post to see the lovely colour scheme you have selected, just click on the "Preview Post" button located below the "Post Icons" box which is located below the white box you type in (the Post Icons box has a bunch of little smileys, an orange exclamation mark button, and a blue question mark button). In the preview mode, you'll see exactly what will appear on the forum when you finally submit your post.

If you want to change the colour of a paragraph or sentence that you have already assigned a colour (e.g. if you want to make a pink paragraph purple instead), just remove the bracketed code before and after your paragraph. Then highlight and start the process over again. I tried to show sample codes, but the computer won't let me -- sorry!

I hope this helps! Have fun!

Angela