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Discussion Starter · #1 ·
Hello all. Just wanted to share.. I have not driven in a long time.. well not really a long time.. almost a month but it feels like forever. I have not gone for many walks either.. But today.. today was a beautiful day outside and so I grabbed my mp3 player and walked a few miles to the store.. on the way there I felt great.. on the way home I had a seizure.. crossed a big and busy street and well I just do not remember it. I sat down feeling like the wind had been let out of my sail and I had a heart to heart with God.. I realized then that I am thick headed, I am persistant and I don't give in so easily. I thought that I should be crying .. because all I wanted to do was enjoy a walk and well I did with consequences.. I laughed. I realized that being all those things could be of use to me if I apply them to the right situation.. like taking care of myself and getting over this flare I am in.. instead of pushing my body to its breaking point.. its like fighting against the symtpoms instead of the disease.. Just thought I would share.
 

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(((((((((hugs)))))))))

We all have moments like that (thankfully for me without seizures just other consequences) but you know, at the end of the day, we learn slowly and end up finding that living/being careful balance somewhere along the way.

Sometimes it does make us cry and sometimes when it all turns out OK like today, it makes us laugh because we felt alive for that time and sometimes that is a risk worth taking (even if I'm not suggesting you push yourself too much every day).

:hug:

Katharine
 

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Discussion Starter · #3 ·
we felt alive for that time and sometimes that is a risk worth taking ... THANK YOU so much for those words.. that my dear totally summed up my day.. and maybe I will look forward to having a few of those a month.. space them out LOL
 

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(((( Jenna )))) it is hard when we want to do things but get consequences. You sound a very strong person, that can be a good thing as we need to be to cope with the lupie ups and downs.

Rest up now, ready for your next venture!! Hopefully the meds will help you get over your flare.

Thinking of you

Deb x
 

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Welcome to the club. I suspect many of us have done things to which our disease objects. I have given up counting but I do recall that recently I had a great motorcycle ride in the mountains and paid dearly for it. Even doing just a few hours of things I love can cost me a week of mostly lying in bed pretending to be asleep. Hoping I can avoid seizures; the "spazes" are bad enough. I spill more cola and water than most folks drink!:)
Hoping things improve for you quickly!
Douglas+
 

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lol bless doug, the coke!! :hehe:((((((Jenna))))))))) its all normal, think we all do at some point............ know what you mean about the seziures, mine were doing okish, and now started back again, scaring me to go aolne again, was doing hreat too............but i know there is worse out at sea ;)

WE ARE ALL MADE OF HARD STUFF WITHIN, WE HAVE TO I THINK ;)

sending you big ((((((((((((((Hugs)))))))))))have a little sleep after this happens, i have to xxxxxxxxx Lin
 

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Discussion Starter · #8 ·
I can not begin to express my thanks to all of you for helping me feel less alone in this world. I do not have anyone who understands personally here with in arms reach.. And so most people do not understand my on going struggles and battles.. Why one day I am good and the next I am not.. How one minute I can laugh and understand and the next I am crying and angry.. Feeling defeated.. I really do miss my walks, I really do miss driving, I miss soooo many things that I have come to truly enjoy over my life.. Yesterday I laid down and stared out my window.. I closed my eyes and tried to remember specific details of that walk.. And I did and when I did I smiled and shed a few tears.. Sad that I can not do it often but happy that I could remember it.. I applied for SSI and they sent me this paper work.. I had to fill out all these questionnaires and I thought, how does one really express or begin to explain what someone goes through with Lupus.. Are there any such words to describe it? I am sure I can conjure up a few but they do not give in nearly the justification it deserves. Ah I am having one of those mornings.. Had my eye exam.. I did walk there.. Had no choice.. Took my kids with me, again had no choice .. And even though it was only two blocks… it was by far the best walk ever.. Now I am exhausted and want to sleep and so I shall..
 

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Jeanna:

I walk...I am now up to about 4 miles a day, broken into two sections. I always walk when hubby is home and bring my phone...so that if I can't finish he'll come and get me.

I walk early in the AM before full sun, love the sunrise as I walk. I walk in the evening after the sun is behind trees mostly.

I have a dog, and we take "his" walks, I go where he wants, we don't rush as he loves to sniff everything (hound in him)...it takes me about 40 minutes to treck the 2 miles and I need to sit for about an hour afterwards, so I make a cuppa and grab a book.

I have learned, as everyone else that we need to pace ourselves, but we also need to push just a little to feel complete.

I started my walks at about 1/4 mile and extended them as my puppy got older...we both grew into it together...but he understands when I am too uncomfortable...and will take what we call "the short walk" about 4 blocks round trip.

Its OK to walk....just start slow as with any exercize programe and work your way verrrrry slowly....kinda like weaning of pred...slow and steady.

Stephanie
 

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Discussion Starter · #10 ·
Thank you thank you thank you

:thumbs: I am glad you said it.. I really love walking.. my problem is I never do anything in moderation and that is a lesson I HAVE to learn.. I walked a few blocks today with my kids.. I was nervous about that. BUT I do have a phone and I could walk when my husband is home .. that sounds like a plan. I have a gym membership .. but thats a long walk and by the time I get there I will be tired.. LOL Today I am hurting.. very tired and cranky. I snapped at the kids this afternoon and well I appologized.. luckily they are loved and understand.. I think I will bundle up and read a book outside and enjoy the Autumn view.. as it come quickly and leaves quickly where I live.
 

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Another thing you and I have in common, I never do anything in moderation either and I really pay for it. I am a full tilt kind of person, stupid if you will who never seems to learn unless it is the hard way.:rolleyes::rolleyes:

I think Stephanie has it right here, slow and easy and bring your phone in the event you run into a problem, then you can call your hubby. I am sorry this happened to you and it is very scary.

Take good care and sleep well.:wink2::wink2::wink2:
 
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