Worried about future

[KMS-oul]

Hi there. I am male 20 from scotland have been dx with lupus for 3 years now although I suspect I've had it 3-4 years prior. It has taken me 2 years to recover physically I was in hospital for a month and to put it bluntly my body was pretty much wasted. Over the past year I have finally overcome the mental problems with lupus and got my act together. Since then I now realise that living with lupus is not as much as a burdon as i thought it was. My body is now fitter than its ever been in its life. I exercise a lot doing long walks, weights and a 350 sit-ups everyday. I am more outgoing and socialble and planning for my future. Ive always known about flare ups and relapses but Ive always assumed from my doc that they were rare or years ahead but judging from the many post on this and another forum it seems that these flare ups seem to be regular and inevitable. I find this worrying and feel that all this hard work I am doing is for nothing as the chances of me being who I was is round the corner.

Can some one enlighten me please.

[Christine UK]

hello and a very big welcome.I have also put this post on the mens section too.
well u HAVE to have a positive attitude...without a shadow of a doubt...its what keeps us going...
good to have u with us :rolleyes:

[HelenS]

hi there, there are no guarantees in life whether you are healthy or have lupus. enjoy those days when you feel good, don't worry about what the future may or may not hold. you know your body better now, and what could be a lupus flare coming on - you came through a rough patch and you know how to deal with it should it happen again. i am so glad you found this site. take care. helen.

[KMS-oul]

Thank you for the reply. I guess it is pretty obvious what the answer would be but i cant help but stress over it. I finally feel like myself again and its taken years of fitness , exercise, eating the right foods and getting psychological help to get to get to where I am. I'm really not looking forward to it but i guess I ll have to deal with it.

Thanks again

[Sannie]

Hi KMS-oul

Welcome to the boards.

As everyone else has said we cannot predict what the future holds for any of us but with the medication and care from a rheumatologist who specialises in treating lupus patients there is no reason why you should'nt lead a fairly normal life albeit somewhat limited at times!

I hope you enjoy being with us!

Love
Sannie

[Tina57]

Hi KMS-oul

I can relate to your fear. While I was recovering physically and mentally, there was this chronic thought of 'will I bottom out again?' This can happen with any chronic illness. Although we cannot predict the future, one thing I think we can predict is that we get better at managing the problems we used to have before.

For one, I won't wait till I'm bed ridden anymore to finally seek help like I did when the disease was starting. I know myself better now and have physicians now who know me, my body, and mind well enough to manage when something goes wrong.

I'm 27 now and no flare up I've had in the last couple years compares to what I went through in earlier years. I think there are many out there who have a similar experience.

Emotionally it can be quite damaging to be so ill during the teenage years. There are many things against us that go through illness at a young age. It got alot better and more stable over the years.

While I can't say that this will happen to everyone; you're doing yourself good to continue on with your life and efforts for self-improvement.

Take Care
Tina :flowers:
PS - is that quote from the Smiths?

[KMS-oul]

Thanks tina i found your reply quite encouraging. I was near death before I got any help but i know what I got now so hopefully it will be nothing when i was in hospital. 3 years ago I lost everything, my looks, my gf and my life. I am scared of history repeating itself thats why I am kind of reluctant of being happy with someone again. But you are all right I cant predict the future and when it does come Ill be ready for it. And yes that is the smiths quote in my sig :)

PS thanks all for the warm welcomes :)

[nancylee]

Maybe it will be encouraging to you to learn that I am 64 yrs. old and was dx'd w/ Lupus Cerebritis (central nervous system) in 1981. Like you, I experienced a near fatal situation but after 6 mos to a year after that, I was doing very well and have only had minor little flare ups since then. I have taken good care of myself....rested for awhile every afternoon (being fortunate in not having to work at an outside job), tried to avoid stress, exercised (went swimming and walked) , and definitely avoided the sun as much as possible. I've lived normally for the past twenty years and noone would know I had lupus unless I told them so. Recently I had a flare up but got through it all right and will have to admit that my greatest fear is going through what I experienced at the outset of the disease. But, if I think I'm getting bad, I go to the doctor. So, try to enjoy your life . Chances are, things will go just fine for you. If, by some chance you do get sick, go to the doc and he or she can "nip it in the bud" !
Nancy

[pennylp]

Hi there,

Welcome to the site.... It is great to have you with us.... My advise to you is to keep up what you are doing... your body is so fit, I am sure if you do have a flare.. it can fight it even better than some of us who are not fit..... I just started to go to excercise classes three times a week, to try and get a little stronger....
I have been hit with a double whammy ,, I have lupus, Ra,, and Cancer.. so my body is weak right now... I would like to get strong so I have something to fight with.....
Enjoy every day and dont worry about tomorrow... You can deal with it when it gets here..... WElcome again.

Love Penny (Mariea)

[rlchu]

Wow, you sound in such great shape! haha.. I'm jealous!!
:P

Yeah, I think alot of us have gone through the mental problems that come along with lupus. I used to cry everyday because of the pain (but in reality, it was mostly because I was sad). Now, I'm just learning to deal. I'm glad to hear that you have overcome your emotional problems.
U just need to live life and enjoy it while you can! :flowers:

[RosemaryP]

By the time you were diagnosed, you were in a real bad way, now IF trouble starts, you would go and get medication fast and not be so ill as you were last time.

[Paul (WI)]

:) Hi KMS-oul!
I am a 51 year old male. I wasn't diagnosed until I was 45, so I don't know how it feels to be a young person who is so sick. I can understand your reluctance to try to find that someone who could become special in your life. I have always encouraged Lupus sufferers to be honest with those who are important in their lives. You need to be honest about the fact that you may have bad days, and that some bad days may be really bad. I applaud you on taking command of your life, both physically and mentally.
Until later,
Stay sane,
Stay safe,
Paul

[KMS-oul]

Nancylee you are quite fortunate to have had only minor flare ups. I hope we all can be like that too , im sure all lupus suffers would too.

Pennylp I am so sorry to hear that you have been hit not just with lupus but with cancer too! im so sorry. Here is me worrying about something that may not happen while you are living through a real rough period and still being optimistic, you are very brave.

Thanks all for the replies. I now realise that I was being a little silly. I cant deal out the cards life has for me so i should enjoy what have. There are people a lot worse off than me. Thanks all for the encouraging replies I really apreciate. :)

[Wendy337]

Hi, :wave:

First of all, I just want to say that I think it is WONDERFUL that you worked so hard to get yourself to where you are now - that is great - it shows amazing strength of character, hard work & perserverence.

I am a 41 year old woman, and I first got sick back when I was 24. I had life-threatening episodes of anaphylaxis, but after I 1/2 years on prednisone, I finally got into remission. I was not diagnosed with lupus at that time and didn't have any trouble being in the sunlight. I had periodic flare ups through the years, but nothing that ever lasted or caused any permanent problems.

I had gained a TON of weight from the pred & other sedating meds that increased my appetite. On top of that, the depression of my situation caused me to eat more - I ended up about 120 lbs overweight. UGH!!!

Starting in the spring of 1999, I embarked on a prgram of healthier eating, walking and weight lifting. I lost by the fall of 1999, I had lost almost 110 lbs. Unfortunately, I also ended up with gallstone pancreatitis. After recovering from a couple of surgeries, my hubby & I took a 2 week vacation to mexico, during which I laid out in the sun almost every day. When we got home, I started having problems with my joints. I thought it was related to trying to re-start my exercise program too soon. Anyways, from there I took on some EXTREMELY stressful jobs, and symptoms worsened, but I didn't make the connection because I had never been ANA positive before. The upshot is, I continued at a breakneck pace, not realizing what was happening to my body, and I eventually became disabled.

The point of all of this is two-fold. One, I think there are some things you can avoid doing that will minimize (but not necessarily eliminate) the chances of a severe recurrence of symptoms for you. Second, I would like to know how you went about starting your body "rehab" program as I would like to do the same. I was pretty buff before I got sick this last time, and now I look like....well, we just won't go there!! ;)

Hindsight being 20/20, I would avoid the following things if I had it to do all over again:

(1) EXCESSIVE and/or UNRELENTING STRESS - decide ahead of time you are putting your health 1st, and no amount of money is worth losing what you have now, which is your health.

(2) When you get sick with any kind of virus or other bug, REALLY take care of yourself. Other people may need a shorter recovery time, but you may need more than the average time - take it & don't feel guilty about it.

(3) Stay out of the sun unless you have adequate protection, even if you are not yet photosensitive - it could still trigger a major flare.

(4) Listen to your body - when it feels tired in a "different" way than the regular tired after a workout, REST. I know that is hard, but I think it is wise.

(5) Try meditating to deal with stress, or some other non-exertional way to deal with stress. That way, if you start to feel lousy, you already have another way besides exercise to rid your body of the excess stress which, if unchecked, could cause a flare. Learn this technique BEFORE you need it.

(6) Recognize that you may have flares along the way, and when you do, use strategies like meditation to help calm you down so that your stress reaction doesn't make it worse & cause you to go into a REALLY bad flare.

Finally, I would like to know how you started your body recovery/makeover process. How quickly & by how much did you increase pace, length of exercise, & dietary changes? What kinds of dietary changes did you make?

This old dog would like to learn some new tricks!! I'm thinking I better not go as extreme as I did last time - I don't need any more problems. I came out of remission in Jan 2000 & have been pretty bad/disabled since. I believe I will be getting a neuropsychiatric SLE diagnosis next time I go to doc due to some recent test results. I had been feeling better until a couple of days ago, now I need to start over. Any advice on pace of changes would be greatly appreciated!!! :):):)

Take care, :love:
Wendy

[KMS-oul]

Originally posted by Wendy337@Jun 13 2003, 02:38 AM
Hindsight being 20/20, I would avoid the following things if I had it to do all over again:

(1) EXCESSIVE and/or UNRELENTING STRESS - decide ahead of time you are putting your health 1st, and no amount of money is worth losing what you have now, which is your health.

(2) When you get sick with any kind of virus or other bug, REALLY take care of yourself. Other people may need a shorter recovery time, but you may need more than the average time - take it & don't feel guilty about it.

(3) Stay out of the sun unless you have adequate protection, even if you are not yet photosensitive - it could still trigger a major flare.

(4) Listen to your body - when it feels tired in a "different" way than the regular tired after a workout, REST. I know that is hard, but I think it is wise.

(5) Try meditating to deal with stress, or some other non-exertional way to deal with stress. That way, if you start to feel lousy, you already have another way besides exercise to rid your body of the excess stress which, if unchecked, could cause a flare. Learn this technique BEFORE you need it.

(6) Recognize that you may have flares along the way, and when you do, use strategies like meditation to help calm you down so that your stress reaction doesn't make it worse & cause you to go into a REALLY bad flare.

Finally, I would like to know how you started your body recovery/makeover process.? How quickly & by how much did you increase pace, length of exercise, & dietary changes? What kinds of dietary changes did you make?


Hi Wendy. Some sound advice there about the stress. My mother is always telling me to pick up yoga and try meditating, perhaps she is right since it helps you. I think thats my main problem right now is stressing but I found exercise helps to take out stress and agression too.

The reason why I started this fitness thing is because after 2 years of lazying about and eating a lot of unhealthy food ( damn that predisolone) i notice that i've neglected my body. I figured that I have a long term illness and that my body should be in the best shape possible to overcome the hurdles. So i decided to change my lifesyle there and then. I eat 3 healthy meals a day, and eat plenty of fish and spinach. I have noticed that my brain fog, vocabulary and to a certain degree my memory have got much better since changing my diet. When I need a snack I usually eat fruit. Sugar free jelly which is very low in fat/carbs/cals is good too to make a filling fruit salid with. With the exercise i started with long walks then progressed to a combination of weights and situps twice a day. Once i lost the belly and the moon face i just exercises once a day.

[3forme]

Hi KMS-oul,

Keep up the good work! Being in good shape and plugging away at staying there are going to really help you in the long run. A sensible weight lifting routine will also help build bone density to help counteract any future bouts of pred(the two edged sword).
I had been fairly active most of my life but was determined to get into a HABIT of exercise at about the start of my issues. I also started VERY SMALL. I changed my eating habits(I kept chocolate!! :lol: ) not overnight, but step by step.
Hang in there, you are a wise person for such a young man! That will serve you well.
Take care, 3forme

[patricia mary]

Hi There, I have just read all the posts on this topic, and found it very helpful. It must be very hard for you as you are so young, I am 54. I have always exercise, swam walked and eaten healthy, my huband passed away 3 years ago and I went to pot! I think that is what bought all this on. I guess looking back I have always had it, but very mildly. I have been thinking about getting back in to shape, but have been feeling a little sorry for myself. Is there any special foods you try to eat/advoid?
I think you sound very positive, and are doing very well to stay as healthy as possible, none of us know what is around the corner, even those who dont have lupus. I am going to try and do all I can to help myself, and try to get back to normal.
Thanks for the great topic, it will help all of us to get off our butts, when we feel well enough and just move around a bit.
All the best
Pat

[nancylee]

Wendy,
Thanks for that excellent list o precaustions, etc.!! What good advice you gave for all of us. I'm going to print it out and have it handy at all times.
Nancy

[lovingana]

HI,

I'm not giving you advices about the disease-'cause i could only quote what others said before me...but i can tell you something about relationships. I'm sure you'll find somone who loves you, and having a chronical ilness you'll figure out much easier she's there for love and not something else...because only someone that really loves you will be able to stay by your side. People that only like you do not do what somone that loves you will do ...just hope...

ana

[Dnabella]

Hello and welcome

:flowers:

When I first became ill I was in great shape...muscular in all the right places...I think its helped me as I had muscles that were able to aid me during times when I was not able to do much...

Im all for anyone who can exercise at whatever pace they feel comfortable with to continue..but at anytime that you feel excess fatigue you should stop...having muscles to protect your fragile joints is FAR more important than many of realize...

Good luck and I hope to see you in the chatroom soon

Donna

[nishah]

I understand ur worried for the future...who isn't? :)
But I do encourage u to do the things that u think r worth trying. It's great to hear that u exercise. I'm a lazylump. :)

I'm 21 and I was diagnosed when I was 11.

I think exercise is good so long as it doesn't strain us. I would probably think of getting more long walks sometime soon. :)

God bless u.

Jane

:rolleyes:

[Yan]

Hello KMS,

I was dxd at 1996 at the age of 21. I never heard of SLE/Lupus at that time and very strange that I was not afraid at all. I was fine after the treatment (about 4 months) and I was perfectly OK in the following 6 and a half years. I even forget that I have SLE during the remission.

Until this June, I was sick again and it was my second flare up. I have no idea but I am scare this time. May be I am married now and I am so eager for a normal life.

The first thing that I have to do is to educate myself and get to know more about SLE. I kept surfing the Net and I found this web site. It is really helpful 'cos I know that I am not alone here. There are so many nice people here to share with.

And I try not to worry about future 'cos no one can tell. Just enjoy every single day of our life and there is no reason to be scare of the disease. And I really believe that we will be OK because of the advanced technology.

Karen :wave: :rolleyes: :lol: :P

[gladm]

Hi There.........For such a young person you have a great positive attitude.
It will get you far. love gladm. :luck:

[Tom]

I realize this thread started over 2 years ago, but I found it a while back and it motivated me to try to get back some of what I've lost through the years. I really do miss the days when I would ride my 10 speed 10 miles a day and run 5 to 10 miles on top. I have even been on a 100 mile bike run on two occations. Even though it's unrealistic to think I could get back in that kind of shape, I'm working on finding out how close I can get.

My doctors have been telling me that I need to exercise for a while now (Being overweight with heart problems :shrug: ) so I figured it was time. From what I have read 2 things always come up, strength training for bones, joints and muscles, and cardio workouts for heart, lungs and circulation. So I bought a bowflex home gym, and I already had a treadmill. I was set to go! :thumbs:

You know when you hear something like "Take it slow" and ignore it because it doesn't hurt while your doing it? Well I'll tell you, the next day I was in tears! :cry: A flare followed and I learned my lesson the hard way. The next time I didn't care how easy it was, I basically just went through the motions but still had pain and fatigue afterward. I talked to my doc about it and he told me to take pain pills if I had to, but to keep at it. I made sure I took them after my workouts so that I could still tell if I was pushing too hard.

I sure had doubts that this was going work because of the pain and fatigue factor, but something happened after a few months. The pain and fatigue just went away! I didn't need to take my pain pills anymore because I wasn't getting sore at all. :woohoo:

Well I thought maybe it was just time increase my workout, and I did. Still no pain. You can understand that I was pinching myself to wake up because this was too good to be true. I can't remember the last time I've felt this good, at least 10 or 15 years. So next I double my workout just daring the pain to come back. Yes I was exhausted, but still no pain or major fatigue even on the following day! I feel like someone gave me a new body and pray that it will stay this way.

I can't say for sure that working out is the reason for this, but I can't think of anything else has changed since I started doing these workouts. I realize a lot of you can't attempt what I'm doing, but maybe there is something to this. Maybe exercise does help make a difference. I will update this as time goes on.

To be continued......

[Pickles]

WAY TO GO, TOM!!!! :jump: :jump: :jump:

I just did those little jumping jacks and already tired :)

What pain pills did the doc give you?? I need some ot them too. I'm always tired just walking in the house. I've thought about getting the gazelle by Tony Little(???)
I think thats his name... and just try to work up to a few minutes a day to see if it will help. I go back to rheumy on the 14th of July..I'm gonna ask for something to help me sleep and better pain pills. Right now I take Lortab which doesn't help that much.

I wish you continued success in this....Don't overdo it though

[Tom]

Thank you Pickles, :love:

It's a very slow process but one I have found that the benifits are making a big difference for me. I had to take it very slow at first, and not give up. Doing what I could every other day, giving my body a day in between for healing. Sometimes I would take 2 days off. After a while, working out started feeling good instead of bad. It's better to play it safe than be sorry with your workouts. I usually stay a the same level for a week or more before adding to it. I am at a level now that I will remain at for a while. I have heard that any healthy muscles tranfer to all other muscles (Athletes that have an injury heal twice as fast if they keep working out the healthy muscles). Maybe that goes for health in general.

I take Vicodin 500mg when I hurt and it has done well for me. You should talk to your doctor about what you are doing and ask for the proper pain meds and exercizes that are right for you.

Take care, good luck, and be careful. :flowers:

[kayakchick]

Great job, Tom! Keep on keepin' on...
Cherrie from WA :woohoo:

[rwb200]

I can understand your fear of possible relapse. Yes flares can come up at any time and that is just one of the best arguments for a person with Lupus to continue seeing there Doctors and getting regular tests to try and catch these flares before they get bad.
At times with some people the flares are more regular then with others. Some do fine for years. It just depends on your Lupus and how it is doing at any given point in time.
I will say this. Your positive mental attitude and your active life style with plenty of exercise will do alot to help you. Maintaining a positive attitude and keeping the stress down is very important for anyone living with a desease such as Lupus.
Eatting right and your exercise will do alot to help keep your body fit and will help you if a flare does come up. It is easier to handle a upset if your in good condition then if you are in bad condition to start with.
Keep up the good work.

[Emmie T]

Hi KMS-oul,

You sound like you've been through the wringer - but come out the other side to a healthier, happier life - good for you!

I was misdiagnosed for nearly 30 years! I had symptoms in my early teens, a serious flare in my late teens and another almost 15 years later - so there is hope that, sometimes, quite a time can go by without serious problems for some.

I am now 42, have suffered more recent flares in the last few years - but this has usually been as a result of being exposed to some nasty viruses - so I can't complain.

I joined a gym - swim as much as I am able (in between studying my degree) and rush about all day at work (when I'm not ferrying my teenage son all over the place)!

My philosophy of life is to take each day as it comes...enjoy what you can and keep yourself focused...it certainly works for me.

Look after yourself...good wishes,

Emmie T (UK) x




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