How do I keep motivating myself to do medical treatments?

February 14, 2013 6:08 AM

How do I keep motivating myself to do medical treatments when I'm so tired, physically, intellectually and emotionally?

I've been very very sick for two years (chronic, not cancer) - the type of sick where you have to quit your job, use a wheelchair, stop driving, and your social life gives way to lots of medical appointments. I'm constantly exhausted. Showering or brushing my teeth are major physical exertions.

I see a counsellor regularly, and I'm not Depressed, but I am burned out. I have carer's fatigue - and I'm caring for myself!

I'm finding it increasingly difficult to make myself do blood tests, Drs appointments, etc. They're tiring and stressful and painful and I'm starting to feel as though my health will never improve.

When trying to explain how burned out about medical treatment I was feeling, I told a friend recently that if I was diagnosed with cancer, I don't have the physical or emotional reserves to do chemo - I'd just lie down and die.

Drs have told me that I might be able to get better - maybe not 100% better, but a lot less fatigued and a lot better quality of life - if I do X, Y, Z exhausting medical treatments, but at the moment I am really struggling to force myself.

How do I keep going? I keep feeling like after every mountain of tests and treatment I crawl up, there's another, bigger mountain...

posted by anonymous to health & fitness (15 answers total)

Ask all your good friends to help you to do what's needed to get to your appointments. Show them this post, ask them to take turns to come over and help you shower, brush your teeth, and get to your appointments.

Spreading the burden will mean that no one person gets stuck with burdensome commitments. If you have an Organized friend, get her to be the coordinator.
posted by tel3path at 6:27 AM on February 14

I think support groups are basically designed for exactly this purpose. There must be an online one you could find for people with your condition. It might help to talk to people who have gone through the same thing but are now in recovery. It might help you see the light at the end of the tunnel.
posted by whoaali at 6:36 AM on February 14

Sometimes, you can't care for yourself entirely, even if you're physically able to do so. It sounds like you need someone to help you. Not just as a nurse-type carer, but as a cheerleader, reminder of why you're doing this, and maybe just someone to take up some of the slack.

If you have friends or family with whom you are close, let them know that you're burning out and would like a little bit of help. It sounds burdensome, but one of the greatest feelings in the world is being able to help someone who asks, and people who love you will probably do that for you.

If you don't have someone close to you that you can ask, see if your counselor or doctor can recommend services that fit within your financial boundaries.

I'm sorry this is rough.
posted by xingcat at 6:59 AM on February 14 [2 favorites]

I'm so sorry you're going through this. Being the sole caregiver for yourself is unbelievably draining and you should be applauded for all you've done thus far. I was in a similar situation and I used to tell my friends "It's like being a single mom... but I am also the baby."

I agree that support groups or throwing money at the problem in the form of a visiting nurse or other service can definitely be helpful. I had a visiting nurse a few times after a recent hospitalization (it was mostly covered by insurance! I was shocked!) and just having someone come by and pick up the slack on one or two tasks for a half hour once a week made a big difference. It sounds like some of the things you need help with are things that anyone could do - driving you to appointments and the like, so you don't necessarily need to pay for skilled help, either.

It sounds like you also need something to look forward to. This can be really hard when so many of the things that 'regular' people look forward to are things that those of us with chronic health problems might dread, like vacations, outdoor activities, commitments that we fear we might have to cancel at the last minute, etc. When I got sick I started knitting a lot. I'm lucky that my illness hasn't affected my ability to do that, and I look forward to sitting in my comfy chair next to my sufficiently bright lamp with a cup of tea at the end of a long day ("long day" means "I had to get dressed and go out for an appointment and prepare my own meals") and working on a knitting project. I also started reading a lot more than I ever did in the past, because sometimes I have the energy to read but not to knit. (Watching TV or movies is at the bottom of my 'energy required totem pole' of activities)

If you haven't yet and you feel like you aren't getting what you want to out of your medical treatment, you might consider seeking a second opinion. I don't recommend doctor shopping or hopping from physician to physician because that can be equally problematic when you have a chronic condition, but if you've been stuck with just one person throughout your treatment thus far, you might see better results AND feel reinvigorated by switching doctors to someone with a different approach.

Finally, if you aren't already, prioritize saving your energy as much as you can. For example, I know that I should buy the large container of yogurt and spoon out a serving into a bowl every morning, but I save myself some energy by buying the individual serving containers instead. It's worse for the environment, it costs me extra money, but my energy is in such short supply that those tradeoffs are worth it to me. For a long time I was so stuck in my old mindset about how I should do things that I wasn't willing to do things like that, but all those little things combined have made a difference for me.
posted by telegraph at 7:23 AM on February 14 [4 favorites]

I have a chronic health condition. It was relatively severe in the past; now I'm much, MUCH healthier. I know exactly what you mean about having carer's fatigue. I remember longing desperately for a day during which I didn't have to monitor myself constantly, attend to small details non-stop, plan ahead for every little thing, etc etc. It's horrible, isn't it? And there's no vacation. I just wanted one single normal day like other people got. I don't think I ever really felt sorry for myself, and I don't hear self-pity in your question. It's just plain exhausting.

Since it was a vacation from my own care that I wanted, sometimes I would just take a day and resolve to enjoy it as best I could, without any effort to think about what to try next, plan anything or test my abilities/boundaries. Importantly, I spent those days doing something totally within my capability, that could absolutely not cause any scheduling problems for others if I felt worse than usual. It wasn't perfect, and sometimes I really wanted to go hiking or something when I was only capable of watching movies, but something about *resolving* to just enjoy myself without any guilt about feeling like I should be working on the eternal project of my health.... it was a small comfort.
posted by Cygnet at 7:32 AM on February 14

It sounds like you need respite care for yourself. Obviously you can't go have a quiet day away from all the medical problems that you take with you, but you need some help. Visiting nurse - cleaning lady - grocery deliveries - takeout food - massage.

In fact, why don't you try scheduling something awesome for yourself like a massage or a facial aft your next few medical appointments? At least that will give you motivation to get out of the house.
posted by bq at 8:34 AM on February 14 [1 favorite]

I sympathize and empathize with this (though it sounds like you're dealing with way more mobility-related challenges than I am, which I am sorry are on your plate). Are you part of any support groups, either in-person or online? Lots of people find that that helps. It's great that you're working with a counselor, but venting with others can be helpful too.

bq's suggestion of scheduling treats for yourself, whatever they might be, seems like a really good one. Of course this is never simple because being sick is so fucking expensive in money as well as time and energy! But think of it as an investment in your stamina, maybe?

Do MeMail me if you'd like to vent or compare notes or anything you like. You'll be in my thoughts.
posted by Sidhedevil at 9:42 AM on February 14

It sounds like part of what's so draining is that you don't have any certain end in sight for all the stress. The doctors have said you "might be able to get better," although it sounds like you're not even sure how much better is even possible. It might help to have an honest talk with your doctor(s) to figure out a time frame for this treatment. When would they expect to see improvement if it's going to work? If it doesn't seem to be helping, at what point would it make sense to knock off the frequent appointments/treatments/monitoring/whatever else is stressing you out, and look instead at just controlling symptoms and adapting your lifestyle to your new capabilities?

Such a decision is scary if you think of it as "giving up," as many people do when they first think about it, but if you think of it as taking your life back, maximizing your quality of life, then it's the brave and strong and empowered thing to do. (Assuming there's not some compelling reason to think the treatment will turn everything around if you give it another week or another month or whatever.) It might also be helpful to ask, "If I stop this treatment now, and decide in 6 months or a year that I want to try again, will that be a possibility?" And also, "What's the worst-case scenario if I stop all these treatments now?"

Only you can decide where you draw that line, when you say "this stuff you're making me do isn't worth the possible benefits." It's important to work with your doctor to make sure you have a good understanding of those possible benefits (and your odds of achieving them), but in the end you get to choose how much you can put up with now for a shot at an uncertain good outcome in the future.

I would recommend setting a date with your doctor, like "On June 1 we're going to reassess whether this current regimen is helping, and decide whether to keep going or stop." Even if you think you'll probably decide to keep going with the treatments when you have that scheduled discussion, knowing that you've got a date to work toward can make things a lot more tolerable compared to a vague treatment of indefinite length. If June 1st comes and you want to keep up with the current plan, do it and set another deadline for re-evaluation with your doctor.

I'm sorry you're having to deal with this. I hope you can also lean on friends/family/support group to help you along the way. Your doctor or nurse might be able to refer you to some support resources, if you're having trouble finding them on your own.
posted by vytae at 10:28 AM on February 14 [2 favorites]

Is professional assistance available for you? Does your county provide Visiting Nurse service, or does your doctor/clinic/hospital provide home care therapists? Please tell your medical people that you need help with your regimen - that is their business.
posted by Cranberry at 11:10 AM on February 14

This is a big unrecognized problem. There are lots of resources available for caregivers, but virtually none for chronically ill people who are caring for themselves. It's a situation that our health care system just doesn't recognize.

The thing that has helped me deal with this a little better has been finding the right primary care doctor -- someone I trust deeply, who will tell me honestly whether or not a particular medical intervention has a good chance of producing a real benefit to me.

One of the incentives of our fee-for-service medical system (assuming that you're in the US?) is that many doctors tend to order any and all teats and treatments for which there is an applicable billing code that will lead to reimbursement. And, they tend to assume that the patient always wants them to be "doing something" to further diagnose or treat the illness. Sometimes this is appropriate, but sometimes the patient would have a better life with less medical intervention.

You need to make sure that your doctors understand that the cost/benefit calculation for any medical intervention is different for you than it would be for someone with typical health or more support. An appointment that would be just a minor inconvenience to someone else might be very difficult for you to arrange, and impose a significant cost on your well-being for days or weeks. You need to hoard your energy like a miser, protect it like a mama bear protects her cubs.

Would it be possible for you to take or plan a "vacation" from all but essential medical visits for a while? Talk with your doctor to identify what's really essential to protect your health right now, and set the rest aside for a while (a few months? a year?). I did this a few years ago as a break from pursuing every medical possibility I could find. I didn't die or get sicker, and it gave me a much better sense of perspective and control.

This might be a helpful read: Jerome Groopman's Your Medical Mind: How to Decide What Is Right for You
posted by Corvid at 12:18 PM on February 14 [2 favorites]

A lot of medical treatments are really painful or uncomfortable. Doctors are frequently oblivious to how soul crushing it is to hurt yourself over and over every day in the name of "living". For me, a turning point came when I decided I did not care whether I lived or died, my only goal was to hurt less. I focused on finding less awful things to do for self care (sometimes there are several options and the doctor just hadn't thought to mention that you could also do y or z instead of x and they might hurt less) and I did things like take hot baths to just hurt less.

I also began playing computer games. Mental distraction from misery can be sanity saving.

You are also welcome to memail me.
posted by Michele in California at 4:18 PM on February 14

nthing:
A 'vacation' - at the very least from thinking about what to do/try next, and if it won't set your treatment back, then from the treatments themselves. Sometimes just giving myself permission to take a break would help me feel a little less burned out.

Energy hoarding - either by cutting out any non-essentials (and reevaluating what is essential - it's amazing how what's essential can change) and/or asking for or paying for help. Having someone close to me who I could talk to about what I was thinking about (treatment wise) helped too, reflecting back I think he almost always basically told me "trust your instincts" or "I trust your instincts", but somehow this (and the actual process of explaining my ideas and indecision) made me feel less alone in the decision making (which equaled less stress which equaled less wasted energy).

If possible something fun - I came up with a list for myself that basically took things I could do (or could sometimes do) and tried to make it seem more 'fun'. Some examples I can remember, if I was able to take a bath (at the time I was only able to bathe about once a week) add some little thing like a face mask or bubble bath and try and frame it mentally as a 'spa day', or picking a tv show or movie series and do a 'marathon'. I can't say this was wonderfully effective for me, but it helped a little, I think in the spirit of what Cygnet said about "resolving to enjoy myself".

And lots of distraction (tv, books if possible, any games that will catch your attention for a time).

Also, living with this level of constant disability is amazingly difficult, and you may be going through one of the most difficult periods of your life (whether it's in adjusting to a new level of functioning or the dark before the dawn). So don't forget to give yourself 'credit' for how damned hard you are working at this job of living and getting better!
posted by pennypiper at 5:37 PM on February 14

I agree with Corvid et al. that maybe your treatments are more than you absolutely need for the improvement you'd be satisfied with. Having a discussion with your primary care and other relevant doctors about the priority of various elements of your care could change your attitude about the effort required for each. And it should be clear to your doctors that continuing as you have been is exhausting to you and must in some way be working against what they are trying to achieve. If you know that certain elements of your care are VITAL, it will feel much more worth the effort to you to make them happen, and it will give you an idea of where you can 'slack'. I don't know about you, but just knowing that there are possible 'slack' areas in any kind of project always make it easier for me to tackle the big idea; sometimes I don't even need to take advantage of the slack - I just know I can and that's a relief.

I would also ask for some estimates of milestones you can expect or hope for. If you go for x type of treatment for 6 visits, what can you hope for? Milestones make it easier to get through bigger tasks and to what you degree they are met can help steer your decision making.

And as Corvid said, if you conclude that your doctors are just throwing anything and everything at this, hopefully you can communicate to them that they need to be choosier about the most efficient course of action. THis will require more work on their part, and maybe more time with you. But you're working just as hard and spending a lot of time on this already...

As some wise person on Metafilter told me, every treatment you undergo is your choice, and you should feel in control of all the treatments you undergo. Anyone whose attitude is different from that should get some questioning at the very least.
posted by Tandem Affinity at 7:21 PM on February 14

I have been in your place. I am much better now...no longer own a wheelchair or have durable medical equipment in every room. I do always have a cane handy if needed. Having the kind of mobility issues you are having is exhausting. Some of the things I did to take care of myself were having friends over to my house instead of going out, a weekly housekeeper, and a telephone. I talked a lot on the phone to others. My friends are all people who knew anything could happen at the last minute so even though I was disappointed at having to cancel things they never treated me poorly because of it. Also having pets helped me. They gave me something to love and to laugh at. At times their care added to my fatigue but they were well worth the effort.

I know you say you are not depressed but living with your health issues is depressing. I took meds for a time when I needed a mental boost and they were helpful. I am currently not taking any but my health issues are very well managed at this time. I would not rule them out if I needed them again in the future.

I am currently dealing with two big medical issues, both involve the possibility of taking meds that have horrible side effects. I have to weigh the possible long term benefits against how badly they might effect my life in the short term. Even though I am doing well the Dr. still wants me on disease modifying meds. I am seriously considering saying no to this.

I hope you get some helpful idea's from everbody in this thread.
posted by cairnoflore at 7:34 PM on February 14

Agree with everyone above about speaking to your doctor. I recently had a series of treatments and when I asked the doctor what the duration would be for each session so I could arrange appropriate child care for my baby, he admitted he had no idea - that he just prescribed the treatment but had never administered it or seen it administered (hooray for nurses, medicine's front line!). It is not only possible but probable that your doctors are not taking your quality of life into consideration as they develop your treatment plan. It's worth having a conversation about that with them.
posted by judith at 10:43 PM on February 16