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Discussion Starter · #1 ·
Hello.. so on top of having Lupus and the symptoms that come along with it and my other medical issues at hand I am also trying to take care of my family. It has been a trying last few years for me. I have always done everything for everyone and never asked for anything in return.. instead I focused on walking and running as my means of coping with the pain and struggles.. I would walk many miles a day.. any where from 4-7 until my flare up hit again a few months ago and I have been down for the count ever since.. in the beginning I found it hard to accept and struggled with the changes I faced at that moment.. finding different ways of handling things such as art, yoga and music and knowing that with time came change.. I started eating healthier and added medication to my daily routine of getting my life back in order. The medication did help and once I began to lower my doses all the symptoms came right back and now they have upped them once again.. and while I do feel better my emotion status has taken a huge hit. Just in the last five days I have had to travel 3 times to far away doctors, I have had to watch my son literally pass out do to his illnesses and my daughter struggle with her illness that has caused her anxiety.. my life is filled with "medical" things.. and while I do have a loving and caring husband, he is non-existing through out illness.. what he does do is work full time hours, he helps clean around the house and is a wonderful dad but when illness strikes and the kids need the support through it, he hides because he can not handle watching his children suffer.. so I do. And I carry the scars for the family.. I bare that pain. My husband is now struggling with major depression and clings to me to help him get through and so once again I put aside all my ails and do what I feel a loving Wife and Mommy should do.. All I ask in return is to be able to to RELEASE the adrenaline that comes along with it all. I want to walk, I want to run.. I need it.. and yet I am stuck with the pain the fear and anxiety and have no place to put that adrenaline.. it musters inside and causes havoc. Last night I hit my wall. I wanted to run.. I wanted to and when I tried my body failed.. I sobbed in regret for attempting and for pushing my body and sobbed because I felt like a failure.. I felt weak. Today I met with my Rheumie.. he understood.. he was compassionate. . . and while he offered a listening ear and some support, I got no answers and so I am home now ready to nap and thought that I would at least find comfort in this website.. and that no matter how emotionally beat I am, you all understand.
 

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Hi there and (((((((((hugs)))))))))

I do very much understand and I think you have written so eloquently what many of us feel though, thankfully, many of us don't have quite as much on our plates as you do :hug:

I really don't know what you can do to release that stress energy that needs releasing. I too greatly miss being able to take my horse out and ride to the top of a lonely hill or go to aikido feeling tense and preoccupied and leave feeling totally relaxed. I haven't really found much to replace it and have to be content with walking very gently (rather than quickly as I used to) with my dog. I hope to try swimming too but I still need to see if that's physically feasible as I haven't quite got over my recent attempt.

Is your husband being treated for depression? I know just how hard it is to support someone on top of everything else (went through that with my ex - not the reason he's ex BTW).

I'm truly sorry I can't offer much more in the way of comfort. The pure frustration that accompanies this disease is one of the hardest things to deal with.

:grhug:
Katharine
 

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Hi Jennannshear,
I am sorry you are going through such a rough time.You sound as though you are coping with it all by yourself and have reached your limit!Everything is all on your back looking after your children and having support from your husband when he helps round the house is not the same as psychological support and having someone to share the stress.
Can you get away for the day?anywhere,to have a break?all I can say is 'look after you' and even though your family are going through tough times,so are you ,can you talk to your husband about it?do you have a close friend or relatives that you can talk to to offload?
I too used to run to release stress,I can't anymore,but I could swim or cycle.For me,getting away and just sitting on a bike going downhill makes me feel better.I do feel for you,the last few months have been incredibly stressful for me and the only advice I can give you is to go out if you feel up to it and can.Mix with other people,chat,take your mind off stuff.I hope you find something that makes things easier for you,
JulsieX
 

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Discussion Starter · #4 ·
Thank you!

Thank you .. really. I appreciate the very fact that someone out there understands.. although in order for you to understand then it would mean you are going through the same and for that I am sorry.

I am currently taking Beta Blockers to lower my blood pressure and heart rate. I recently walked slowly on the tredmill.. figured I would start small and monitor my heart.. but even at a small dose I tend to raise my heart rate and feel ill. I then attempted to swim but that too caused me problems.. now I am can lazily float around and enjoy the peace it gives me.. its the silent moments that tend to get me.. its like that question "do you enjoy the company you keep when you are all alone?" Sadly I once did but now today. I am trying though.. I called my mom and asked her to watch the kids this weekend. SO tomorrow I will drive out to my moms, drop off the kids and go to Water Safari.. Maybe just maybe going on a few rides will get rid of the adrenaline with out me having to physically be active?! Either way, the brake will do myself and my husband some good.. thanks again for your advice.. both of you have helped just by responding. I think the biggest aspect of my tears was not having anyone listen when I reached out..
 

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Hi sorry you are having such a tough time. It is hard to cope when we have no release. You certainly have a lot on your plate. I am sorry I can't do more to help, I can only say I empathise. I hope you enjoy your break at the weekend and that it recharges you.

Take care

Deb
 

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Hi, and I hope your break gives you the rest you need. I don't know if this will help you, but maybe it will. I find that with my reduced lung function, down 60%, I don't have the ability to do swimming like I used to. I solve it by using a "water noodle" to give me a bit of support and I am able to work around the pool that way. I also use indoor pools as due to our sun limits, outdoors is just too much sun and/or chilly. At least here in the pacific nw it isn't worthwhile. At least worth considering.
Sally
 

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Hi there Jenna,

I just wanted to let you know that my heart goes out to you and that I understand everything you have said here and put into words so well. You have echoed what many of us feel. Your not alone.

I hope you enjoy the break from the kids and alone time with your husband. We all need that from time to time, does the heart good and sure helps in the relationship arena too.

I hope you enjoy the water safari and your alone time with your husband. Sometimes that is all we need to give us a boost to keep going. Take some pics of the seals please...................I LOVE SEALS!!!

Keep your chin up and come here whenever your down. I hope you feel better.:wink2:
 

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Discussion Starter · #9 ·
I am back.

Thank you .. all of you for your support! I appreciate it all!!!!


We had a great time.. it was not easy to get around but I did.. and now I am exhuasted physically but emotionally I feel much better!
 

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i know its hard, sending you big (((((((((((((((((((HUGS))))))))))))))))))
i still miss the gym, you hang in there hun xxxxxxxxxx
 

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Hi So happy you had a good time and a rest. Let's hope it helps you to get by for lots of days and weeks now. I feel for you and would like to send you a big hug. I too used to be super fit - ran marathons for charity, loved to ski, and walk out in the mountains now its takes all my time to walk around for my work but still there are the times when the symptoms subside for a little while and we should make the most of those whilst being careful not to wear ourselves out. Thats the hardest I think when we ae used to being all things to all people. Take carexxxxxxx
 

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(((Jenna)))

I know where you are coming from. It is hard being the mother while being sick yourself.:hug: Having sick kids too.:(

I know that struggle with kids. I had a handicapped daughter who was total care. My husband was great support in helping me with her.

It is heart wrenching seeing kids not feeling well and you don't have any control over it.:hug:

I am glad you and your husband got to get away just the two of you.
Once a month my husband and I would go out on a date, just the 2 of us. We had someone watch our daughter. (Our daughter was glad to see us go so she could spend time with her very dear friend. They were more like sisters than just friends)

Try and get away just the two of you when you can. The 2 of you need to spend some quality time with each other. Maybe you and your husband go to a doctor appointment and tell the doctor what your husband and you are going threw.

:grouphug2:
Lyn
 

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Discussion Starter · #14 ·
My husband was walking by while I was reading the posts.. he said he though it was a good idea to go out once a month.. and I agreed and so we shall attempt it. We do not have many people we feel safe leaving the kids with LOL but I am hopeful we can find someone : ) School is starting for the kids today and I have slacked on my school work as well. Today is a day of catch ups and get it done... I am exhuasted and plan on find naps in between all the craziness.
 

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Hi Jenna,

I am happy that your husband likes the go out on a date idea.:)

Our daughter had "home health aids" that came every day Monday threw Friday. We had 3 really close HHAs. They are the ones that I felt comfortable with leaving Candii with.

Maybe you could get someone (like a friend or family member) to come into your house and help out with the kids. That way you could see them around your kids and your kids could get comfortable with them being there. I know this might take awhile but feeling comfortable leaving them might be easier for you. Then there is the cell phones that will keep you in touch when ever you are out.
When we were out they would watch movies, make it a fun night. I know Candii loved scary movies. Her care giver (more like a sister) hated scarey movies. Candii loved to tease her.

Love,
Lyn
 
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