Going Mad

324 Views 9 Replies 9 Participants Last post by Jesse88, Sep 19, 2008

naz

Discussion Starter · Sep 13, 2008

Hi hope everyone is fine. As you know I have sle and was having problems with joint and all, had blood test last tuesday waiting for results. But can someone answer one question as some of you know i have been working for then 9 hours every day, today was my day off but offerd to do a 9 and a half hour shift on two diffrent department. For some reason I carnt stop I feel I have to keep myself busy I feel anxiouse knowing i have a day off it feels like if I stop all the tiredness and pain will hit me i carnt stop yet money is not an issue.

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Joandublin

· #2 · Sep 14, 2008

Hi Naz

It sounds to me like you are in a very heightened state of panic and anxiety about your diagnosis. I really cant answer as to why you want to push yourself so hard. Perhaps its in your nature or there are other things driving you?

The only thing I can say from experience is that if you continue to push yourself beyond your body's ability you will absolutely crash at some point and you could end up very ill.

The trick with this disease is to pace yourself. When I am totally exhausted and need to take a day off I have learned to do nothing else but lie down on those days. These are the days when I feel like I could sleep forever. Believe me, these time out days do help to recharge the batteries but the truth for me is that it only lasts a short time. I have to constantly charge and recharge my batteries if I am to have any chance of functioning. If I have a particularly hectic couple of days I will crash badly if I dont stop and rest. On average I have learned that I need at least one (sometimes two) of those complete rest days each week. These are days when I do as little as possible - just the bare essentials to keep the house ticking over.

Please try and listen to what your body is telling you. It takes a while to get the hang of it.

Take care
Joan:rose:

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halfpintfl

· #3 · Sep 14, 2008

Hi Naz, I am very sorry that you are feeling so bad. Yes,
a lot of it could be panic and anxiety, but then as to why you can't stop ; well maybe it's because you like to be in control all the time. Things will be done when you say
they are done,. If you stop and rest then you feel like you are slaking off. Now please, that was not meant to be a put-down in any way, I want to help and support you, not get you hurt. My point was going to be that my hubby is
a Control Freak, and he knows it and tries to break the habit. The whole key here is just what Joan said : you
must learn to pace yourself. If you don't, you may find yourself confined to bed. One of the main key;s to Lupus
is, " stress=pain". So please slow done, take rest periods
and start being kind to yourself, as it is you that really matters. smile.:wink2:

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naz

Discussion Starter · #4 · Sep 14, 2008

I actually hate my job but if im working my Mind Is off the pain And when It comes to resting Im tired And in pain And in a away I Want To Avoid The Pain By Continuaslly Work. But My Manager Realised What Was Happening And gave me A day Off. Let's see Personally I Dont Know What It Is But I Know Im Afraid Of Pain

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Maia

· #5 · Sep 14, 2008

Some people also try too hard to prove to themselves and others that they can still handle/do everything they used to do even with a lupus diagnosis. It could be that you are afraid to be by yourself with this disease now? Somehow being alone can be scarier than carrying on.

Although, I do know what you are talking about in that when I am really busy it can sometimes *seem* to make the pain less while the activity is happening by being an excellent distraction. This was true for me while I was still working too... but for me after months of keeping on like that I just got worse and worse and the evenings were shot as were the weekends.

I agree with the pacing yourself suggestion, learning how to do that... and learning how to be by yourself with this disease and be fine with it.

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LolaLola

· #6 · Sep 14, 2008

Dear Naz, I just wanted to send you my Best Wishes for you to be able to find a way through this.
We have all had to adapt, and if you can try to do that (I don't mean give in but do alter what you can) you will save yourself from a major collapse.
x Lola

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lazylegs

· #7 · Sep 15, 2008

Hi Naz,

Working helped me block out the pain also. Unfortunately it also helped escalate the severity of the disease activity. You need to listen to your body when you are flaring and ease up. Try finding a hobby you can do sitting to occupy your brain.

I hope you feel better soon.

Take care,
Lazylegs

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Becks-jd

· #8 · Sep 19, 2008

going mad

Dear Naz, and all replies.
be easy on yourself. i have had lupus for 10 years, and only recently got properly to grips with the pacing thing. sorting out your head is hard work, especially if you're like me. i always used to tackle problems on the basis of if it's difficult, throw more energy at it. now energy is the thing i don't have. i've learned you can still achieve big things by chipping away, doing just a bit at once. i am a natural hare turned tortoise, but that's not all bad. i've had to take on new interests (someone mentioned hobbies sitting down) and they've been great. i gave up basketball and took up music, and that's how i met my husband. life is strange, and good things happen when you don't expect them. good luck, and be kind to yourself most of all.

Becks-jd

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MichelleAnn

· #9 · Sep 19, 2008

Naz,
I agree with all the responses. It took me approx. 2 years to realize I had to slow down. I made the disease much worse by pushing myself that I ended up having to leave my job completely. Now that Im home, I still pace myself and only do what Im up too doing. Takes all I have somedays just to shower, blow dry hair and make dinner. Then I have to lift the fork to eat and Im too exhausted. I usually rest before I eat. Take your day off, pamper yourself, watch television or do anything else that brings you pleasure and relaxation. You deserve it. My children now understand, and my friends. My friends see me alot at times, then other times, not enough. All depends on the Lupus and how I feel. I think the hardest judgement is ourselves against ourself. I was one to do it all without help (Work, family, home, social, etc....) I still dont any help, but allow it sometimes.... Im also not working so have more time to do things...Ive learned that life does not end if the laundry sits over a week. The dust on tables is there. I keep all clutter picked up and taught kids to do their own laundry. Its a personal thing when you are willing to accept Lupus is with you for life. If you feel good, then do it. The pain and fatigue is my worst enemy of Lupus. Take care of yourself please. :rose:

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Jesse88

· #10 · Sep 19, 2008

I agree with all of the above and I really do understand how keeping busy is such a good distraction. You need that distraction to control your pain and to keep yourself from thinking too much about your diagnosis. What I would suggest is keeping busy in a more relaxing way. Do you have any hobbies that you could take part in that wouldn't tax your body but still keep you occupied? Preferably something where you can sit, like reading, knitting, scrapbooking, painting, etc. You're right to stay busy, but some of it has to be "low key" busy so you don't burn yourself out.

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