This merry-go-round sure is fun but I'd like to get off now.
October 9, 2016 11:32 AM   Subscribe

Well, I have a few really awesome problems that I would completely recommend to anyone. I would suggest you try any of, or especially the full combination of, the following:
  • Chronic illness
  • No social network
  • Mental illness
  • Geographic dislocation
  • My question: how do I build a decent life? Or start in that direction, in a stable way that won't fall apart in a light breeze. Again.

    In my early 20s, I was going to college in an otherwise unfamiliar country. During a set of other stressful circumstances (housing instability, difficult relationship, etc), got a virus that never quite let up. Thought I was better that summer, relapsed with a vengeance on my return to school. Dropped classes left and right then finally had to quit school. Decided I had to move to another country where most of my family live but where I have never felt comfortable, in hopes of support.

    That was the start of what's since been diagnosed as CFS. It's been a few years now. I haven't been able to return to study or work, or even keep up any significant interests or hobbies despite my best efforts. Since then, ability has varied from “can leave the house a few times a week for a few hours at a time, in addition to looking after self reasonably well” to months of being confined mostly to bed, unable to look after myself.

    Have bounced from staying with various family, to various housing situations that collapsed either due to my becoming too unwell to cope or problems with roommates/landlords. All this upheaval made me much sicker each time – I haven't had the time, space and support to stabilize, much less recover.

    Due to the isolating effects of the illness as well as moving around so much, both before and since getting sick, I don't have much in the way of social support. A few friends in various locations, some far. Nowhere is home. I'm currently back to living with my parents in an extremely isolated place that is totally unsuitable for many reasons, and where I don't know people and even my parents don't have much in the way of a social network.

    The combination of stresses from these circumstances and inability to see concrete ways to improve my situation have brought on depression and anxiety, which ebb and flow on a daily, weekly or longer basis. I believe some of it is physiological, coming from whatever is causing all the other physical/neurological/cognitive symptoms, some circumstantial, and some due to things I need to deal with. It's a vicious cycle, since mental/emotional distress sap energy & exacerbate physical illness, and illness and isolation can cause this kind of distress. I have started meditating in the last few months, which is helping a remarkable amount, and more recently begun online therapy.

    As to my physical health, I've tried the usual cavalcade of conventional and alternative remedies, and some wackier stuff too. If you haven't been there, believe me, when you're desperate enough you will try all sorts of goofy shit. With the medical system in this country, it can take months or years to get referrals to specialists, so the process of ruling out everything that should be ruled out has been extremely slow. I have had to fight every step of the way and still do not consider this process complete – there are other, not necessarily even rare, possible diagnoses that should have been ruled out before I even got this diagnosis.

    The cognitive effects are particularly debilitating. For months at a time I've struggled with understanding and forming words, unable to do more than lie in bed and occasionally listen to brief chunks of simple audiobooks at a slowed down speed. At my best I'm still often confused and struggle to make decisions.

    I've also made a lot of fairly major misjudgements in terms of life choices, since getting sick and also before. Before, I already didn't have a place that was home and was already stuck in some existential loop of where do I go, what do I do, so did a lot of wandering and starting things and not following through. Now, I don't know where to go or what to do, and I can't do much or look after myself without assistance.

    I need somewhere to be home. I can't stay with my parents here indefinitely – this is a dead end. I can't get out even when I'm well enough to and there aren't things for me to do around here. I feel sure that my health could improve if I had a stable life, with social connections, some enjoyable and maybe even productive things that I could do within my limitations, and the support I need, which I am very lucky in that I could pay for assistance if necessary. I don't know how to get there from here.

    Choosing a place to live, moving, building a life and making new connections is hard enough if you are healthy and have a job from which at least some social connections might flow. Given my limitations, it seems impossible, but I can't accept that. I may or may not recover to whatever extent but I want to live the best life I can within my limitations. How do I at least work towards building myself a stable adult life?
    posted by bizarrenacle to Health & Fitness (8 answers total) 6 users marked this as a favorite
    Concentrate on your health. When you are sick and no one knows why it is VERY easy to blame yourself or life or stress or whatever for your illness and think that if only a few things change you will get better. This is magical thinking. Strongly encouraged by society by magical thinking none the less. You would not be expected to beat cancer by getting a nicer apartment would you? But people think you can beat other diseases, which is total nonsense. This leads to people like you blaming yourself for being sick, which is unfair and counter productive. Make it your number one priority to see the relevant specialists asap, even if you have to travel. Don't waste your energy on anything else right now.

    You have what sounds like a disabling condition and you need a better diagnosis and treatment. That's Step One. Once you get that sorted out the rest will come. You will be a different person after a serious illness, trust me.
    posted by fshgrl at 12:22 PM on October 9, 2016 [2 favorites]

    I can relate to a few of your issues and really empathize with you. I'm struggling through some of that right now and hope that you can build up a support system over time. A part of me feels like you should work on improving some things regardless of where you live, while another part of me recognizes how limiting your place of residence can be.

    Things that I suggest:
    1. Read Stop Being Lonely
    2. Find a contemporary church. i'm not super religious but there are some great welcoming communities of supportive people to be found. (If organized faith isn't your thing, sorry!)
    3. Read This is Where You Belong
    4. Music heals. Get a Spotify account. Listen, explore, curate, and absorb!
    5. Read Move Your DNA: Restore Your Health Through Natural Movement
    6. Exercise, walk, yoga, tai chi, hike, learn ceramics, dance. At whatever increments you physically can, move your body and keep it in motion for extended periods of time, a few times a week. Classes are great too. This really, really helps physiologically and psychologically.
    7. Make sure your Vitamin D levels are good. Most people are seriously deficient and power dosing seems to help me and a lot of people I know with mood and autoimmune systems.
    8. Try to find the silver lining(s) in your current surroundings and celebrate what your body can do. Reaffirm that every single day with an almost childlike gratitude, and slowly expand that list as you try more things over time.

    posted by doctordrey at 12:27 PM on October 9, 2016 [10 favorites]

    Have you been checked for Lyme Disease? Your symptoms sound very similar. (Also parathyroid which is different from thyroid.)

    Anyway. Get a therapist. Even an online or phone therapist. There's lots of online services out there. Maybe someone who used one can comment.

    Next advocate for yourself with the doctor. See if they have a cancellation waiting list or any emergency appointments or anything that can get you in sooner even if it means calling every day. Advocate for the severity of your symptoms as well.

    Also instagram has been helpful to me - of all things. It's something to do and I've met great people on there. Tumblr also had a chronic illness community.

    The main thing I'd say though is therapy and doctor and that should give you some direction. I think the illness path is different for everyone but those are things that have been helpful to me.
    posted by Crystalinne at 2:12 PM on October 9, 2016

    I agree with what others have said about continuing to work with your doctors/therapists, but in the meantime...

    Have you ever tried/can you do some yoga? I don't mean sweaty workout power yoga, especially not with your fatigue, but how about simple, slow, gentle stretching and breathing? Maybe even some that you can do in bed?

    I think this might help you/does help me for a couple of reasons:

    * Yoga is about accepting where you are that day, which is good practice when dealing with a chronic health problem
    * Yoga in general (and especially Yoga With Adriene, see below) is really good for my mental health in terms of soothing anxiety, reminding me to focus on gratitude, and helping me to see the bigger picture
    * I feel like I've done something productive and healthy, even if I've literally just rolled around on the ground for 15 minutes, which is also good for my mental health
    * When I feel most kinds of icky, getting up and doing something gentle actually makes me feel better, as opposed to staying in bed and getting stiff/sore because I'm laying in one place for too long
    * Focusing on what hurts in my physical body, working (gently, mindfully) to ease it, and breathing deeply really helps me feel better mentally and physically

    I really, really, really love Yoga With Adriene, because the videos are accessible and fun and free on YouTube and emotionally uplifting, and most of all because a regular practice with her has gotten me from chronic neck/shoulder pain to pretty much no pain when I'm good about keeping up with it! (I'm not in any way affiliated with YWA. I'm just a major fangirl!)

    Some specific videos you might start with are:
    * Intro to Yin (all about setting up comfy restorative postures and stretching/breathing in them for awhile)
    * A Little Goes a Long Way (simple stretches and breathing)
    * Yoga Camp Day 8 - I Choose (a restorative focus focused on choosing to be present and find what feels good)
    * Yoga for Bedtime (a slow, gentle practice that I think you could literally do on your bed)
    * Day 24 - Gentle Yummy Yoga (supported, restorative)

    You shouldn't need a yoga mat for any of these - you might want a blanket or towel down on the floor for some of these, but otherwise you should be fine!

    Also, I don't have CFS, but I have had fatigue in the past and many of my family members have chronic illnesses (of the fibro/CFS/lupus, etc., varieties), so if you ever want to just chat, send me a MeMail! Not sure I have many more actual suggestions, but I can be a friendly ear anytime!

    There's also an active, supportive, friendly YWA community (on Facebook and a separate forum site) if you try Yoga With Adriene and love it.

    Good luck and hang in there!
    posted by bananacabana at 8:29 PM on October 9, 2016 [3 favorites]

    Yes, please get checked for Lyme Disease! Your story is extremely familiar to a friend of mine's - mysterious virus at a stressful time, followed by years of debilitating fatigue that was misdiagnosed as CFS. She was on disability, had to use a wheelchair for a while, moved home. Finally she was diagnosed with LD and her situation has vastly improved.

    Other than that, I would suggest finding one thing you can improve now and working on that. Whatever is doable in your current situation. Good luck.
    posted by lunasol at 7:29 AM on October 10, 2016

    Response by poster: Thanks everyone who has replied so far. I appreciate all your suggestions.

    I'd like to clarify, though, that what I'm looking for is practical ideas on how to establish yourself in a new place as an independent adult while dealing with severe chronic illness. I know it's possible, I know people who have done it, although they have wider social networks than I do. I know it's a long shot, but I thought maybe someone here has some relevant experience or could point out something I'm missing.

    I already meditate, do yoga, do therapy, have participated in online chronic illness communities, etc. After nearly 5 years I know most of what there is to know about managing this kind of illness. Yes, I am pursuing alternative possibilities with doctors though, as I said, that is a very long and drawn out process in this country. I cannot in the meantime sit around a house where I see only my parents and can't leave the house unless they drive me.

    fshgrl, I have no expectation that establishing myself somewhere else will cure my illness. But it may never go away, living in isolation indefinitely sure won't help it, and pinning all my hopes on finding a different, treatable diagnosis instead of trying to make a livable life while exploring other medical options is equivalent to quitting your job to sit around the house hoping to win the lottery.
    posted by bizarrenacle at 9:57 AM on October 10, 2016

    Response by poster: There are also serious practical health reasons not to stay here, like a mold problem they won't address among other things.
    posted by bizarrenacle at 10:17 AM on October 10, 2016

    Joining a Meetup group in your area for some things you're interested in can be a good way to get out and about and meet new people in your area. Because they tend to be event-based meets rather than regularly scheduled meetings, there's no expectation of regular attendance and you can come and go to them when you are able and no one will bat an eye.

    If there aren't any Meetups near you, maybe check out your local library/game shop/community center/art gallery/coffee shop/whatever and see if they have anything posted for language classes, game groups, art classes, etc. that you might be interested in.

    Unfortunately, most of these suggestions are predicated on having a reliable form of transportation to and from these meetings and I'm not sure what method would work best for you. Rides from a parent is dependent on them being there, Uber/Lyft can get expensive, and asking a friend for a ride won't work if you don't have a network yet. Are you eligible for disability? Sometimes you can apply for shuttle programs or something like that, but they may only be for doctors appointments. (I know very little about this, so please take all of that with a grain of salt.)

    Also, I know the focus of your question was to work on making friends in/around your geographic area, but I wouldn't discount the value of online connections. They don't all have to be chronic illness-based; playing an MMO or taking part in other online activities can be a great way to make connections, and it's possible that some of them may end up being in your area. Bonus!

    Good luck! This sounds like a rough situation, and I hope that you are able to find a course of treatment to help target the worst of your symptoms so you can start feeling a bit better.
    posted by helloimjennsco at 11:36 AM on October 12, 2016 [1 favorite]

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