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Went "Riding" for My Husband


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#1 Peggy

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Posted 29 July 2008 - 04:03 PM

We have all read and participated in the thread in how this disease has changed us. Well tonight I decided that I needed to go riding with my husband. Before this disease we would go riding on our Harley Davidson motorcycle 2-3 times each week. We would ride to another town, have supper, and then ride back home on the back roads. It would take about 3 hours and a great way to spend a summer evening. Well this year I have gone for a ride 3 times! Yes, 3 times all year. I am usually so sick, tired, and in pain that I'm not able to do it. But I decided I should do this for him as I feel bad that he has to go by himself and this disease has affected him so much but he never complains and is always there for me. So deep down I was dreading it all day and wondering just how I was going to be able to do it. We left at 5:00 and the weather was perfect. It's 86 degrees, sun shining and absolutely beautiful. It felt good to be on it again but yet so hard. We stopped at a DQ and I ordered a hamburger and ice cream and was only able to take one bite of the burger. For so long I have no appetite and not able to eat at all. I have lost so much weight and honestly don't know what my body is sustaining on but it is. He noticed right away that I wasn't able to eat and right away got worried but I assured him I was OK. We then headed for home to go around the lakes and I sat back there with tears on my face in so much pain and now so sick to my stomach and counting down to when we would pull in the driveway, but so grateful to have this time with my husband doing something we enjoy together.

The jest of it is this disease has taken hold but I am trying to fight it with all I've got. I wouldn't trade this evening for anything and I was able to do it. I am paying a physical price for doing it but I'm still glad I did. The guilt that I have on just how much this disease has changed my husband's life is hard too just like Karen said in her post. Our spouses and family are changed as much as we are.

Sorry to have bored you but I just wanted to share a day in the life...............................

warm hugs to all,

Peggy

#2 Sweet

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Posted 29 July 2008 - 04:09 PM

Oh Peggy,

You have not bored us. I am typing this with tears running down my face and sobs coming from my chest. I am feeling just like you! I sat my husband down tonight and cried and cried about what a waste of skin I am. I feel like I can't do any of the things we used to do and had to bag out of something tonight that he went to alone. I feel so badly for him and I'm feeling particularly pathetic myself. I hate this disease, I'm having a very bad week and so sorry for the pity party. But I hate this disease with a passion.

I love you all and I'm so sorry for everything we are having to put up with!
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#3 smurfette

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Posted 29 July 2008 - 07:17 PM

Peggy,
I am proud of you for going and am sorry that it was so difficult for you. I know how hard it must have been for you! You are very brave to do it! I know that your husband appreciated that you did go and that you spent the time together. This disease takes over our bodies and our families and changes everything. Your story broke my heart. I hope that you feel better tonight and that you recover quickly from the ride itself. We often push ourselves to be with our loved ones or to do something and pay the price during or after. The repercussions can be pretty awful. I am sorry that is happening to you. I know how important those rides are to you and your husband. You gave your all. That means a lot to him I am sure.

Sweet - I understand how you feel. I sometimes feel that my husband married this woman who appeared healthy and then SURPRISE! I got sick and everything changed. I know that you feel that he is alone doing something you used to do together. When you are up to it you two can do something else. Remember that we are lucky, our guys stand by us and they understand that we can only do what we can do. I am sorry to hear about your bad week and hope that you start to feel better immediately. I think sometimes that weather changes effects how I feel. Maybe you are suffering extra because of that - sometimes my disease just likes to kick my butt for the joy of it. I wish you positive vibes.

I hope you are both doing better. This is such a nasty disease and as we all discussed on a different thread likes to mess up all parts of our lives. We can do what we can do..... figuring out what that is is the hardest part
Smurfette

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#4 barefut

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Posted 29 July 2008 - 07:27 PM

Peggy,

Thank you for sharing your story. I too am in tears. I raise my cup to all the husbands/wives/children and significant others who love and care for us and who also have to sacrifice along with us.

Please know how much you are appreciated and how much you are loved right back!

#5 susie54

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Posted 30 July 2008 - 12:53 AM

WAY TO GO PEGGY. You are so brave and endured so much for your husband's well being. Sometimes you just want things just the way they were on a summer evening. Sometimes it is worth the pain but you really endured alot. I felt your words down deep. Susie54

#6 truman

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Posted 30 July 2008 - 01:27 AM

Peggy:

I'm so sorry it was all so hard on you. I read the posts of you and Sweet and I think this is why I never remarried. Believe me, I don't want to add to the fire, but I would never really feel comfortable not knowing whether or not that my spouse would secretly resent me. In turn, I do have it with my sons. After a wonderful reunion due to my hospital stay, they have again shut me out of their lives. No response to emails or phone calls; so you see I have it in others ways, but they make it more blatant. Sometimes I think thats a little better, as then I can move on. The only difficult part is not knowing why they are doing it, they just "shut" me off like I don't exist.

Throughout the years, I have seen a counselor on and off during very trying periods such as divorce, single motherhood, diagnosis of this disease and my sons' alienation and found these sessions very comforting. Maybe you or you and your husband could attend them as well which would set your mind at ease as to his feelings of the situation. Maybe he needs to vent his feelings of this disease as well to put a calmness over his fears and anger.

Keep us posted and remember, we're always thinking about you...........
Tru

It is what it is...........

#7 Margaret

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Posted 30 July 2008 - 02:22 AM

Pamela & Peggy ,

My heart sank so low reading your posts this morning. I guess it never 'clicked' how it would affect your spouses.

I do know that since Sadie died, I have been very bothered/fixated on this disease. I thought Sherill (did I spell that right?) died last year, but it was only this past March. Now Glenwood posted that her Mom passed away............

As with the previous post on how this disease has changed you, I treasure my time with Gareth.

I will keep you all in my thoughts.
Take care, Everyone.
Margaret

#8 kellyA

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Posted 30 July 2008 - 04:14 AM

I can relate, last week while on vacation down the jersey shore, my kids (ages 4 and 8) wanted to go to the waterpark, that's all they talked about and my sister (mind you who is in very good shape and healthy) bugged me to go and told me I could do it, well I did. How I went down those slides is beyond me but I did and the next day I paid the price every bone and muscle in my body hurt, everytime I walked it hurt, but I did it for my kids, I wanted to show them that I can do some things.

KellyA

The price we pay!!

#9 razz

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Posted 30 July 2008 - 05:49 AM

Peggy,

I applaud you for withstanding what you knew would be painful and draining on your body. But you did it to please your husband who's always there for you. That alone, I'm sure for you was worth it. I admire your unyielding strength in fighting this disease and your love for your husband. You are both blessed to have each other.

I, like Truman, don't have a significant other person in my life. I went through this disease scared and alone. I wonder what it would have been like if I did have someone there. Would he have supported me? I don't know. Even now, I wonder if having someone in my life would help me get through the down days. It would take a special person to be with me especially in my physical condition. I don't know who would even consider such a relationship.

My children helped me immensely. Their love and patience motivated me to get better. I resisted the urge to give in or give up.

Your post reminded me that true love exists. Even though the ride was difficult for you to bare, and you paid the price for it, your post left me feeling good inside. Do take care of each other always.


Hugs,

Razz
Live well, Laugh often, Love much

#10 Peggy

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Posted 30 July 2008 - 11:19 AM

I can't thank all of you enough for your posts. You need to realize that I mean from the bottom of my heart how much you mean to me. It's because of your insights, comments, and caring ways that also helps me and encourages me to fight this disease. It's because of the strength and advice that you give on how you deal with it that I'm able to tell myself that I should be doing more. Truman, you are such a strong and smart woman. I really wish I could sit down across the table from you and pick your brain as you seem to really have it together. Razz, I really wish you did have a significant other too if that is what you wish. You are such a caring and encouraging woman you would so make their life better that they would be blessed and lucky to have someone like you. Barefut and Smurfette - you are always there with encouraging words. This forum wouldn't be the same without you and I always look forward to reading what you have to say. Kelly - good for you for doing that and you know exactly what I am going through today. Margaret - Gareth is so very fortunate to have you. You are always there to give such good advice and you have dealt with so much you are always there with such knowledge, and Pam you are the sweetest woman. Your loving ways exude from your posts that you must have one lucky family to have you in it. Again, thank you all. It's because of this forum that I garner added strength each day to fight like I do and I thank you and I send you...................

warm hugs,

Peggy

#11 smurfette

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Posted 30 July 2008 - 02:47 PM

Peggy--
Your kind words are appreciated. Supporting one another is what gets us all through the day and night. Being able to open up about our feelings and our questions to others with similar circumstances helps immeasurably. The kind words and good wishes makes all the difference in the world. I thank you for yours.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#12 truman

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Posted 30 July 2008 - 08:16 PM

Peggy:

I'm always here for you, pick away. Send a PM for my personal email address if you wish. We're all in it together. They say two heads are better than one; look how many heads we have here on this forum! :)
Tru

It is what it is...........

#13 razz

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Posted 31 July 2008 - 01:39 AM

Peggy,

I've always wanted to help people feel better. That's my nature. Words have healing power. The right words can give us a sense of well-being. If I can make someone smile and think tomorrow will be a better day or take their mind off their sorrow, I feel like I did something good. It works both ways, because you and many here make me feel better. Maybe someday I will find the right partner. If not, that's okay too.


Hugs,
Razz

:)
Live well, Laugh often, Love much

#14 Karenlee

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Posted 31 July 2008 - 03:11 AM

Peggy,

Sorry for chiming in so late. I just read your post and I know exactly how you feel. Wanting to do things for your hubby because he does so much for you ane not wanting him to miss out on the things you used to do. I'm glad you went, because even if you felt beat up the next day, you will eventually feel better and now you have a new memory with him.

I used to go to all of my husbands shows, but lately I've been staying behind. You've inspired me to make an effort to get back out there more and enjoy them with him. Although they end pretty late (sometimes 3-4 am) and my ears are ringing the next day, and my feel are aching and burning from wearing a pair of high heels all night dancing around, I know he misses me being there. So thanks for the inspiration. I will be out and about more instead of turning into a hermit.

Sincerely,
Karen

#15 luvbnmom3

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Posted 31 July 2008 - 03:15 AM

Wow! That must've been difficult, and obviously the ride itself isn't the only difficult part, but it is the anticipation all day & the pain, etc., afterward... it is an all day thing I imagine! I'm glad you were able to get something out of it as well, feel that it was worth it.

#16 Denelle

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Posted 31 July 2008 - 04:46 PM

Way to go Peggy!!! I am glad you are fighting with everything you have. You rock!

Love ya,
Denelle