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View Full Version : Be the strongest you can...but how?



Jaynie
09-30-2013, 04:53 AM
Hi peeps!

So I had my lupus clinic Friday. I saw a different doc and she really listened...I was even comfortable to share the silly little niggly things that I worry sound trivial.

My clinical results are all good, normal etc. I am just so very very drained, tired and weak. I just can't manage the things I was managing a few months ago (it might have been longer....probably more).

Anyway, she said I could consider Cellex. (I think that's it...something like that). She said its well tolerated and I might not feel poorly on it, but it'll be stopping the lupus stuff so I might feel better.

I'm inclined to think I just have to be satisfied with the life I DO have and learn to live like this. I've been I'll since I was 17, (23 years ago) so I don't really have an idea where I would be if I was we'll...I've always been like this. But lately it's holding me back...back from what?

So....I need to be stronger, physically. How do I do that without making myself worse? How much is too much? Everything is effort, everything. Is that my head or my body? Is that illness or lack of real exercise?

Swings and flippin roundabouts!!!!

#what-to-do-for-the-best
Jayniexxx

SleepyInSeattle
09-30-2013, 07:58 AM
Well, i don't know the details of your case....but I do know change can be scary, so probably what you're feeling is pretty normal! It's great you have a doctor who will really listen.

All I can tell you is that I was very resistant to going on Methotrexate (for a number of reasons - toxicity, side effects, etc), and now I wish I had done it sooner. I look back at how I USED to feel (which I had become wearily accustomed to) and I can't believe I spent so many years like that. I FEEL SOOOO MUCH BETTER NOW, I would never go back to the "old Lupus me".

It took me a few months to adjust to the medication, and I did have side effects for a while - I worked with my doctor to minimize them, and also my body just adjusted to the meds, and now it's no problem at all to take them. Lasting side effects are really minimal, and totally worth it, because I feel so much better.

Don't be afraid to reach for a better quality of life....

ruziska
09-30-2013, 09:05 AM
How to be the strongest that you can? One step at a time. One moment at a time. Trial and error. Education. Self advocacy. By living each day one moment at a time if necessary. Educate yourself. Learn everything you can about your illness. Self advocacy- you are your own best advocate. You will learn what does and doesn't work for you. What you can and can't do. You will learn when to pace yourself and when you can push yourself and you will learn how to bounce back when you overdo it. Every day that we wake up, we are stronger than the day before. We have lupus, lupus doesn't have us. Is it easy? No. But giving up is not an option. There is too much living to do.

Abbyrition
10-01-2013, 01:51 AM
Hi Jaynie,

I am struggling right about the same place you are at the moment. Every month my rheumy prescribes a new med, and that deals with a great bit of trust that the doc knows what he's doing. And to boot, trusting a doc is pretty much an oxymoron after all the bad, or incompetent docs I've come across while trying to figure out all that has been going on.
My therapist asked me the other day if I felt like I do all that I can. I couldn't answer yes to that question. The therapist then went into all the things I do handle, and considers that more than enough, and he would say I do all I can and them some. Even with his praise, and acceptance I can not say I feel I do all I can do. Mentally, I'm still stuck on old me. The superwoman, the go-to gal, the one that never says no. I probably do an eighth of the things I used to do. Those things still need doing in most cases. So when I do one simple task, say the dishes, and I need to sit for a few hours to let the fatigue and pain subside, I look around and see all the things not yet done and feel like I should do more. I understand in my head that I need to change my perception of my expectations for myself. I also know that takes a lot more time and effort to accomplish than just knowing/saying so. So I'm not at acceptance yet for my disease, disability, or expectations, but I am a work in progress, and with time I will grow, change and adapt... I just know this part is frustrating and uncomfortable.

So to answer your question, it may be both mind and body. I know that stress and anxiety make my symptoms worse. Having worsened or new physical problems make me have stress and anxiety. It's been a vicious cycle the last 7 years I've been dealing with symptoms. So the answer is treat both. Just know it doesn't have to be overwhelming all the time. For the mental try meditating, or reconnecting with nature, or see a therapist - everyone needs someone that will listen to them, even if you are paying them to do so. For the physical, trust your doc, and if you don't trust your doc, find another. Lupus flairs shouldn't go untreated, as I understand it only makes things worse. I haven't been able to get into any routine for excercise yet, but it's the mental holding me back from that too... The doc recommended wading in a pool. I love the pool, but I have yet to get there. It's been hard enough to get dressed on a regular basis, much prep for pool - expend energy excercising - be too tired to shower, chlorine will be horrible for Sjogren's on skin and hair if I don't shower... It's just exhausting explaining how exhausting the process is... The thing is it will only get better with excercise, effort and weight loss. I justify my delay only with the hope the meds will kick in, cause less pain and make movement and the effort easier to get started. It's one more of those things on my list of "should be doing". So the best advice I can give is the advice I would give to myself. Take one day at a time, take time to rest and really do what's best for your body and mind, find supportive people be it here, or family, or a support group. Call on your friends to help during this down time even if it's just to sit and watch tv with you in your pajamas. I find those days to be my favorite relaxing recuperating days. Because I have company I don't feel obligated to be doing things, work, medical stuff, day to day stuff. And as always, laughter is the best medicine. If I'm alone, feeling down or trapped I will go look at LOLcats or damnuautocorrect, and laugh until I cry it's so funny. Oh and get familiar with the cost of things... I found it best when explaining to other to say, every action I do has an associated cost. Brushing my teeth may mean a 15 minute rest afterward, showering will be an hour cost, a *full* shower will mean 3 hours cost. Grocery shopping costs 1-3 hours depending on the day, and a 4 hour day in the sun will be a cost of 3 days, going bowling will be 2-3 days, ect... Your flair has made your costs change and you may need more rest and recuperating time after any actions. The better you can be recognizing the costs, the more proactive you can be on your day/effort, and you can make sure your body gets the time it needs.
I by no means am any sort of expert, and in no way have a handle on my own funk... So take what you can from my advice, and if nothing else, know there are others out here going through the same.
I hope your meds kick in fast and your flair is short-lived.

Jaynie
10-01-2013, 04:07 AM
Hi peeps.

I had a long chat with my husband last night and a few of my kids were in and out of the room whilst we were talking. We don't have many secrets here, they are always in the know. It just works for us that way.

My husband thinks I should avoid the celcept (I forget what it's called LOL) for now. My family seem happy accepting that I'm capable of less than usual and that the possible cost of initially getting used to the drug exceeds my current discomfort.

Honestly, what makes me so unhappy, not being able to 'do for them' makes it so hard. I hate watching them pick up the pieces (my pieces) when I am so drained and have been sitting around all day crafting or watching tv or if I have found energy to go out and do something. I feel like I just 'take' from them. I believe that raising five children...good children, loving, capable and reliable children is something I have achieved, but I just want to BE someone. I want to not have to struggle all day...making choices about what I can and can't do. Sometimes it's so convenient...I can just sit here and they all work round me and I have a completely valid excuse. But it FEELS like an excuse. I just can't do it all. I'm glad I don't have to, so why do I feel so unhappy about it? I just hate all the worry and planning and over thinking.

Must be time for another counselling appt....

Jx

SleepyInSeattle
10-01-2013, 08:08 AM
Everybody has to make their own decisions, and I am no doctor, nor do I know your case...but do keep in mind that Lupus actually DAMAGES your body -- sometimes the fatigue and aches are symptoms of bad things that are happening inside due to inflammation...so even if you are okay putting up with the symptoms, you might NOT be okay with what is happening underneath them. Just something to consider and maybe discuss with your doc. You don't want to set yourself up for more severe trouble down the road. At some point, the side effects of the drugs are less harmful than what the disease is doing to you. It's an awful decision to have to make, but at some point most of us have to make it.

Again - not saying at all that this is you...but just consider it. I think many times people put up with things too long because they are afraid of the drugs, and in the meantime the disease is destroying their body in ways that cannot be reversed.

Abbyrition
10-01-2013, 04:47 PM
I agree with sleepyinseattle on all points. We all have to decide what's right for us, but I'm wary about accepting limitations for a condition that may/can be helped, especially if untreated it's only option is to get worse.
I wasn't sure the medicine you were speaking of, so I didn't bring up but I began Cellcept on my Rheumy's recommendation yesterday. You speak of cost? I don't think you weree speaking literal, but just in case... My cellcept is rather inexpensive under my insurance. If you don't have insurance, Affordable Healthcare Act began enrolling today. My co-pay is under $5 for Cellcept's generic. Yesterday, (I was advised to take it with food) I had no side effects. The doc says it takes two months for it to kick in, but I'm really pleased no crazy side effects to deal with.
Many people look at the list of side effects and get scared off from treatment that could help... I hate to hear people forcing themselves to suffer for the fear of the unknown.

I don't know that is what you're doing or your story, but I would recommend having your treatment course discussions with your doctor. Take your husband to your appointment, tell your doc your concerns, and ask if he/she shares the concerns about a treatment plan.

Even if you stay with your decision already made and do nothing, I wish you the best, and hope you have more good days than bad.

Oluwa
10-01-2013, 10:16 PM
For me..usually it is one word 'Pace'. But I do know if I live hard, have fun, which I do too... have a few cocktails, dance....paint the house and etc ....push myself through a day or two, Lupus will collect and take my body for a few days.

I've tried the big guns, Imuran, MTX and I swelled. My legs looked like the trunks of an elephant at my ankles...so they took me off of it because they considered my symptoms to be an allergic reaction.

I am all for anything that will make you feel better....try it, you never know. What if....'What If' it is the drug? How lovely would that be....Lots. Don;t be afraid of joy befre it even starts.

As for everyday management....I take a nice hot shower, rinse with cool to cold H2O. I do push-ups against the shower wall. As I walk about the house I do lunges. I lift and do curls and etc with 5-8 pound weights. I do 30 situps and a few yoga poses to maintain a strong core. I find it hurts no more, nor less than my norm when I am done. If the pain is acute...stop. As with all things moderation. Acute pain stop, moderate pain push a little..and I think you will do fine.

You would not want to start from scratch..no muscle..but if you are...learn to take the stairs, walk a block...stretch you legs up as you cook, use small dumbbells while you watch TV. Learn a few core exercises. The weaker we are, the more we are going to hurt even if it is to walk to the mail box. Keys words. Ona Move...keeping moving, no matter how small.

Keep looking for your wellness..
Hugs,
Oluwa

Jaynie
10-02-2013, 04:41 AM
Hi sleep, Abby and oluwa,

Clinically speaking I am in remission. Plaquenil has my lupus under control (clinically), so any treatment is considered only for my comfort more than as a necessity. They have offered it to me as a choice. I'm very lucky plaquenil and amitryptaline pretty much have me under control. I am still dreadfully fatigued tho, and my concern is whether that is because of my illness or because of my inactivity.

I have little energy and little strength so I am starting from the bottom. I guess I'm scared to push myself, but I am also scared to leave the safety of what I know, which is choosing the lazier option. I am so used to micro-managing everything that giving things a go is hard. I also think that part of my problem is that I have become depressed and introverted and I want to hide away from the challenge and stress of everyday life.

I have five children aged from 17 to 10 and most of my adult life I have always had to be careful what I do. There has always been a physical motivation from having children and providing everything for them. That was always self limiting and I always had to keep a few 'spoons' in reserve.

But now they are older I am faced with the choice of sitting in, sleeping all day (I NEVER choose that option LOL), crafting or pushing myself. I like what is safe and comfortable. I think maybe now I am realising that there has to be some physical effort to become physically stronger. I'm just afraid that I will fail, that it will be too hard and I hide that under the excuse (or maybe the reason) of not feeling great.

Abby, I'm really interested on what goes on with your cellcept. I'm fortunate that cost as in money isn't an issue...I meant the cost as in how poorly I could get. I took Dapsone when i was 17 and it gave me acute haemolytic anaemia. Oluwa, I really am starting at the bottom. Even the breathing exercise on my yoga app is too strenuous for me! Sleepy, I am VERY afraid of starting new drugs, but my lupus doc (and colleagues!) are watching me closely and at the moment it is only a choice and NOT a necessity...thank God!

I'm beginning to think my limitations rest within my head. I like the easy life too much, it is simple, straightforward and I dictate it completely.

Thanks for replying. It's nice to have people who listen and understand without me feeling judged. I appreciate you *smile*

Jx

Oluwa
10-03-2013, 02:37 PM
It can be daunting, intimidating to change our routine, but for us managing our disease also consist of maintaining our current health in the form of exercise and nutrition.

I am always fatigued, in pain, in a fog from SLE. I am not considered as being in remission by my DRs..I manage it. I flare every other day..sometimes for an hour, sometimes for days. Riddled with pain, fevers. I accept that as my 'norm' but I still move, still exercise because of the what ifs. What if I feel better tomorrow. Sure I have days where I can do absolutely nothing. I surrender my body to Lupus..let him have it for a day, perhaps for two. It is a life we have to do with Lupus, share. Thinking of the saying, I have Lupus it does not have me.

Life for me is like this...if I have a painful right ankle as I walk, why concentrate so much on the ankle that causes me the pain? Why not focus on the steps the less painful ankle feels. Enjoy the relief of the left foot...awwwwwwwwww. It is hard fighting the pain, so really focus on the parts that feel good. Lay and mediate on those and perhaps you might find a spurt of energy, confidence.

Pace yourself, add more as you become stronger. The more we sit, even as with a person with just arthritis will definitely hurt more, lock up, muscles atrophy become weak. Ona Move...add one more Yoga pose. Think of muscles as strength and that strength, when we can open a jar, lift 20lbs, walk 10 blocks, shop for an hour and sit in a movie to boot gives us the positive energy, the feeling of being independent and confidence.

When you say you are afraid to fail, you have already set yourself up, your mind for failure....that is the failure..not trying. Keep looking, keep doing.

Example me...I had 3 spine surgeries, titanium plate installed, carpal tunnel surgery. I have sacroiliac disease, SLE and all the cronies that come with it, DDD, GERD, Gastroparesis, Fibro, SJS, Raynauds, RLS, sciatica to rattle off a few. I say this not for empathy but to give you the momentum, the courage to choose the option to move..to see someone else is doing it with you too. Encouraging you.

Keep looking for wellness...it could be anywhere.
Hugs..Oluwa.

Nonna
10-03-2013, 04:04 PM
Jayne
Flares come and go, but I think that the fatigue is always around. I'm in remission or at least a period of inactivity.

Abbyrition
10-04-2013, 11:22 PM
Thanks Jayne for the update and info. I'm glad the Plaquinil has the SLE mostly managed for you. I wish I hadn't gotten allergic to that one. It really felt like it was starting to work right when I broke out in hives.
The fatigue and joint pain are my biggest issues with SLE, I figure if I can just get those handled I can go into the world and pretend to be normal again... Perhaps that's when I'll be able to adapt the mantra that "I have Lupus, Lupus doesn't have me", becuase right now - it's got me... But then I'm still new struggling through the mental stuff that having this disease and the mandatory lifestyle changes brings. Please don't misunderstand - I'm fighting the good fight every day. I know your post, Oluwa, was supposed to be encouraging, and I hope others in a different place than I'm at can find it helpful. I'm just not there.
Jayne, I can tell you years ago, I was on amitriptyline. Instead of in bed 13-15 hours I was in bed 18-22 hours a day. Perhaps look into this as an option regarding your fatigue.
After that I tried Cymbalta. It didn't work on my pain levels but it did help relieve the situational depression I found myself in having an undiagnosed condition (before I was diagnosed was one of the most difficult times). Treating the depression even though we weren't treating the SLE helped get me out of my flair. The depression was like a cyclone making my SLE symptoms flair harder. I'm not saying Cymbalta is right for you, or even that medications must be your answer. I am saying treatment for your depression will help your SLE, and specifically the fatigue.
Another option to discuss with your doc, and your family... When I was diagnosed in July I was started on steriods to try to get the inflamation down. At my first follow up I let my doc know my concerns, the joint pain and the fatigue. I also made him aware of the side effect of insatiable hunger and eating from the steroid. He suggested Phenadrine for the fatigue as well as to curb my appetite from the steroid. I was a bit taken aback as I had heard all of the negative information regarding Phen-fen back in the day, but my doctor felt this was safe, and a good option. I looked into it once I got home and did my own research on the risk/reward. I have to say, this med is amazing! I get up every morning. I don't even need a spoon to brush my teeth or put my clothes on most days, and I get dressed most days! This was not the case before phenadrine. Most days I would lay in bed, thinking about getting up and getting dressed. Some of those days I would convince myself just to go to the restroom, as once I was up I would be able to keep going. To get out of bed I would have to literally roll onto all fours on the floor and get up from there. Needless to say getting myself to the restroom 7 feet away was about all I couold manage those days. I still find I need to rest and/or nap around 3 or 4 pm, but it is not even remotely the same. I'm not normal, by any means. I still have to take it slow, watch to not over do it, and stay out of the sun, but it really has made a huge diffence in my energy level. Plus even on the steroid, I've lost 10lbs. So, I know this medicine has risks, and side effects... I also know I'm not a slave to my bed today. I know that I've got more spoons because I don't have to use them to brush my teeth.
So I guess to sum up, if your SLE is pretty managed and you're only big concern to deal with is fatigue I understand your hesitancy starting cellcept. One of the biggest concerns as we head into flu season is how will I manage to stay away from all the sick people? I don't look forward to the possibility of hospital visits for the common cold, nor a duration of 3 weeks of sickness for something normal paople handle in a week. Unfortunately, my SLE isn't managed yet, so we'll see how it goes & I'll keep you informed. So far week one is pretty okay as far as direct side effects.
As always, what's right for one, may not be the answer for another. I do love that this forum is available so people can share what is right for them and what has worked. I like knowing the meds I'm considering, or am trying do and have worked for others. If nothing else I like knowing others understand.
I understand... And I wish you the best fighting the depression and fatigue!

Jaynie
10-06-2013, 12:43 PM
Thanks for the advice. I don't k ow what's wrong with me lately. Everything just seems harder. I'm side tracked and self involved. I'm fatigued (not sleepy...which I was a year ago....til I reduced the amitryptaline ). I'm in a downward spiral.
I don't know if it is more my head or my body. Emotionally I am just wrecked...maybe I am depressed.
I'm scared to stop the amitryptaline because I need to sleep...how else can I make the crappy days finish.

Today has been a hard day. I have just felt drained completely, maybe I'm coming down with something. The struggle is driving me nuts. I hate asking for help. Inevitably, because of the unpredictable nature of my Lupus, most decisions about doing and not doing things are last minute. People don't understand my constant answers of 'maybe' when I am invited to things.
I have been letting things slide at home (housework, washing etc) thinking I will be feeling more up to it 'tomorrow', but tomorrow isn't coming. I hate struggling like this, so how can I ask other people to struggle to accommodate me especially when requests for help are all ad hoc and last minute?

My head is buzzing. I don't know what's going on inside it today. Better get to bed and lock it all up.

Still really appreciating your input peeps.

Jx