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#1 | ||
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Junior Member
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![]() In the preceeding weeks I have experienced a lot of ups & downs (mostly downs) about getting older & the MS progressing (the fact that mom turns 80 9 days after my birday also does not help). As I struggled to get ready to go out this morning I started to realize that like many I focus on the signs of MS people see; my loss of balance, frequent falls, walking problems then it hit me - THESE ARE NOT THE THINGS THAT DEPRESS ME With problems such as those mentioned I COULD make a pretty good life for myself; maybe even hold a job again. The things that are the MOST FRIGHTENING & the things that PREVENT ME FROM LIVING ALONE are the little things, little things that most people take for granted... Drying off after a shower without help Being able to brush the back of my hair without help Being able to wear shirts or pants with buttons (can't do those buttons anymore) Being able to tie shoes (and/ or sweatpants) Being able to zip a jacket without having to attach a large ring to it to help me Remembering to take my meds without a noisy "voice alarm" reminding me 4 times a day Being able to plan events day OR night & NOT having to think - is it really safe for me (or anyone else) if I drive at night? Being able to plan & organize my day without people having to remind me in a variety of ways what it is I need to accomplish for the day Being able to cook independently (can't do this because several times I forgot to turn off the stove or oven) Being able to go to familiar places without someone helping me plan an elaborate "direction" plan so I DO NOT get lost Being able to check my sugar at the times I should so I DID NOT always have to take my dog everywhere with me (I love Espy to death but sometimes I would like to go out without her) Not having to miss parties or social events because it is too far for me to drive alone Being able to get in & out of bed without a variety of devices to assist me Being able to get in & out of my van without a variety of devices to assist me And something only women can appreciate - not being able to hook my own bra It hit me this morning that we learn to dress ourselves around age 3 (at least I did) & we assume this is something that we will not ever need assistance with again - THEN ALONG COMES MS. So as I turn 49 (in a few hours) it dawns on me I am reverting to my childhood in many ways, needing to rely on others for asssistance, having someone cut my food up small (hand problems & swalllowing problems), having someone help bathe me & someone help me brush my hair & I would be amiss if I left out the fact that I am always wetting my pants or the bed or both. No this IS NOT how I pictured myself at 49 but life has never gone as planned for me. I approach this birthday with some mixed emotions. I think just since my last birthday how many more things I cannot do independently & it leaves me to wonder - what will 50 bring? My bio dad died at age 26 (before he knew there would be a me) & in some ways I have to be grateful because I am seeing many more years than my dad ever did. I am trying to revamp my "life plan" find a direction that is both manageable & comfortable for me. I try to present a good "front" when people brag about how well I cope but when I am alone at night is when the fear sets in. I know starting early tomorrow my phone will begin ringing with well wishers & I will need to be "happy" "happy" but no one could know my underlying fears. When people ask "how are you?" I usually give the socially correct answer "fine" but once in a while I wish SOMEONE would say "cut the ******** HOW DO YOU REALLY FEEL?" ![]()
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"OUR LIVES BEGIN TO END, THE DAY WE BECOME SILENT ABOUT THINGS THAT MATTER" Last edited by Chemar; 11-30-2010 at 08:44 AM. Reason: NT language guidelines |
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#2 | |||
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Member
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All I can do is give you a hug . . . .
((((((((PegMeerkatz)))))))
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We live in a rainbow of chaos. ~Paul Cezanne . |
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#3 | |||
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Magnate
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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#4 | |||
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Elder
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hugs from me too!
I hope you know there are some things that can be made better with assistive devices. Front closing bras, velcro shoes, or slip on shoes, longer handled hair brushes, or brushes that strap onto your hand, microwave ovens shut themselves off, and wont burn down the house, I love slip on pants, and pull over shirts. They actually have some pretty styles now, and we are not stuck in sweatpants and tshirts. I am sure if you google handicap helpers you will find several sites that offer many wonderful products. from a long round circle on a stick that helps you apply lotion to assistive towels. Actually, I taught my mom to use a bath blanket. She lays it on the bed, and rolls around on it after her bath to dry off. she pulls it around her and just cuddles, and rubs in it till she is dry. Happy Birthday! ![]()
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RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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"Thanks for this!" says: | TRESA (11-30-2010) |
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#5 | |||
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In Remembrance
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((((((PEG))))))
You are so lucky to have these people to help you every day, the well wishers who remember your birthday, your lovey helper doggy and your Mother celebrating her 80th birthday with you. ![]() Happy 49th Birthday and many more returns of the day. I had the most fun in my 50s, even though my MS slowed me down. ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#6 | ||
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Member
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Sweey 49 Peg! I just turned 60-aauugh-but its the best birthday I've ever given to myself - bought myself a cocker spaniel - who is now the love of my life.
You made some great points in your note that gave me great pause. And, it is way easier to dwell on the down side and a lot harder to fight those fears away and just accept and plan forward. But, fear in my book is a HUGE waste of time. Accomplishes nothing positive. I just take each little set back and wonder how to keep moving forward while dragging the ball and chain. I love to be creative. So, all of Dejibo's ideas were great and as for the drying off bit - here's what I love to do....I turn on my electric blanket and pull it over the towels I have laid out on my bed. Then, I shower, throw on my terry bath robe, run to bed, and fall out on towls and then pull warm sheet and blankets over me and then take a 30 min warm nappy. LIke a little cocoon. Have a great birthday and, by the way, my brand new grandson was born this afternoon...so I'll always remember you also on this special day in my life.
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DX: Graves Disease DID=Dissociative Identity Disorder Kidney Disease Liver Disease MG Occular MS - Bladder/Bowels/cognitive/muscular/fatigue Partial Complex Seizures of Frontal/occipital focal radiating into an encephalic whole brain high intensity centralizing in autonomic system area. Brain atropy/brain tumor/brain skull thickening Transient Periodic Paralysis . . . . |
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"Thanks for this!" says: | Dejibo (12-01-2010) |
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