Friends and lovers (or chronic lack of!)

Me/cfs is an invisible illness. Not only because there are no outward signs (I look completely normal until you see how slowly I walk up hills, or notice how many naps I take), but because many patients are housebound or bedbound, and can slowly fade away from the consciousness of the healthy, active, busy people. There are many tales of loneliness and hurt over lost friendships on the support group forums. As well as slowly disappearing, people can misunderstand the illness and accuse their stricken friends of making it up for attention; or being unwilling to help themselves, when they don't accept "helpful" suggestions of dietary change, "positive thinking" or homeopathy. 

Comparatively, I feel very lucky I still have friends, and that most people in my life have never doubted me. However my experience of friendship has certainly changed. 

I spend a lot of time alone these days. I could never really apply the introvert/extrovert dichotomy to myself in my previous, healthy life, as I was both. Apparently that means I was an ambivert, but I wasn't like I could be either and didn't mind either way. I needed both enough time with friends and enough time alone. CFS has forced me much further into introversion, as I now need time to recover after peopling. But due to this I don't get as much peopling as I would like. This is just an unfortunate truth, along with all of the other limitations this disease has imposed on my life. 

I very rarely experience spontaneous interactions anymore. All "catch ups" are carefully planned, and most are initiated by me. I don't receive many invitations. The one exception to this trend is a friend who is far sicker than me. I think this is because when you are the person with less flexibility it is somewhat inevitable that you instigate catch-ups, as you need more control over the timing and frequency of your social interactions, which consume finite energy. However, if my friends respond positively to my messages and seem happy to see me when we do meet, then I am happy to keep instigating. I don't keep trying for very long if they don't respond though, because it is in my nature to wonder if I've done something wrong, or they don't enjoy my company anymore. (Rationally, I know it's more likely that their life is busy, time is limited and I'm just not one of their priorities at the moment, not that they actively don't want to see me). 

(For the record, I would like to receive more invitations. My social capacity does exceed my organising capacity. But I know I would have to say no a lot!)

In addition, infrequently "catching up" with people is a very different sort of interaction to going on an adventure, or working on a project together. You feel obligated to talk without breaks, to share all your news in a limited time, rather than a natural flow of speaking and silences, silliness and seriousness. I miss the ways that I used to be able to spend time with people, and I'm grateful that I still have a few slow-camping friends, who enjoy things like jigsaw puzzles, cups of tea, making art, micro adventures and looking for bugs. 

My very-sick friend, who is fully bedbound, is sad that sometimes her old friends drop away and she cannot make new friends. However I've been luckier, as even though I don't leave the house much, I do have housemates, some of whom are now my friends. Housemate interactions are different too. You can be quiet and reclusive, or talkative and cheerful, and talk about small inconsequential things. You don't have to say everything at once. There can sometimes be more tension with negotiating shared living space, but also less pressure to "catch up". 

I've also made a few online friends, which I wouldn't have thought was a real thing before. And some old friends are supportive online, which I appreciate, even though I don't see them in real life. I do spend too much time and share more than the average person on Facebook. This is me compensating for less IRL interactions than I would like. That and I appreciate the slower, more thoughtful conversations that the written word can allow. Social media has its advantages and disadvantages. But I prefer it to isolation. And people I didn't even know very well have responded to my call outs for help via the platform, which has been amazing. (I know that the "love languages" theory is just unproven pop-psychology, but if it is real, one of mine is definitely practical support. It's hard to think about much else when you don't know how you're going to get your next meal, or get home from the hospital). 

I sometimes feel like some of my previous friends might have been fair-weather friends. But I don't blame anybody. I really cannot guarantee that I would've been a very supportive friend if it had been the other way around, as I might've been too busy doing all the things. People have moved further away, had kids, demanding jobs, exciting adventures and life challenges that I don't even know about (because I haven't seen or heard from them!). It's pretty common that people prioritise their time and energy on their romantic partners and nuclear families, when they have them. Or we may have been growing apart anyway. (I have had too much time to ruminate on friendships from the past that have ended [or indefinitely paused], and wonder if I was thoughtless or difficult in some way. [But I know I was never intentionally cruel]). And I wonder if some people shed me as a friend when I first got cfs, because they feared I would become a burden, and would ask for more help than they could give. Or perhaps the fact that someone like me was very healthy one day and disabled the next was too confronting for them. This may be hurtful, but I do understand. I'm not irreparably upset with anyone. 

It's possible some people don't know how to treat me, or feel nervous about what to say after this significantly-life-altering illness. Some things are the "wrong" thing to say, and I have complained about this publicly on facebook. However it's not as simple as "just treat disabled people the same as everyone else", because we do need people to know about our limitations, and we need to be able to ask for help. Personally, I want to be treated with the same dignity and humor as everyone else, as much autonomy as possible, and the same assumption of intelligence and responsibility as always. I need understanding and assistance, but not pity, false cheer or toxic positivity. (I'm pretty forgiving though. It's not as if I have never said a thoughtless or stupid thing!) 

However, I think the reason I'm lucky to have retained enough friends, unlike others with CFS, is because I had some top quality ones to begin with. I used to do a lot of volunteering, and I believe that is where you can meet the good eggs. (Some very weird eggs too, but overall good ones). And perhaps my part of Tasmania has a greater proportion of people who value things like community, nature and a slower pace of life. I'm so lucky that I got to be healthy until I was 33, and had the chance to give out a lot of energy, and cultivate this community. 

So in conclusion, my experience of friendship hasn't stayed the same, but I still feel like I've been one of the lucky ones. CFS is a chronic, ongoing, indeterminate, possibly forever illness. It's not a short term crisis that can be rallied around, with an end date. It's not very fun. I'm very grateful to those that continue to respond to my messages, come on my slow camping trips, have boring catch ups rather than fun adventures, and offer help when I ask. Friendship is both universally common, and individually rare and precious. 

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Of course my experience of CFS is also shaped by being single, from 3 years before I got sick.

It's not necessarily the worst thing. I'd much rather be single than be in a bad relationship.

But I sometimes miss having a person. Old jokes, reliability, comfort, tenderness, and someone on your side. That's the fantasy anyway. It could be bitter retorts, stale conflicts, infuriating habits, and taking each other for granted. Or more likely, a combination of the two, but hopefully more of the former. I know relationships take work, even if they do have good bones. 

On the plus side, I haven't felt like a burden on any one person. When I need help I usually ask on facebook, hoping at least someone in the wider network has the capacity to help me at that time, rather than expecting one person to do everything. (I'm lucky I have the capacity to do this management myself. My bed bound friend cannot use screens or phones, and is very dependent on her partner. If she didn't have him she'd probably have to be in a nursing home, not in their lovely, quiet bush-side home where birds, trees and marsupials bring her glimpses of joy).

I know it is possible to have a strong, mutually beneficial relationship that has weathered some huge life changes, and isn't at all what you imagined when you first met. However not everyone's relationships survive things such as CFS. The healthy partner's dreams and plans are also impacted, whether that be for children, shared adventures, or just plain-old shared workload. Being someone's carer is a lot different to being someone's romantic partner. But some relationships do endure, and are even better for it.  (Here is an abc article on this )

However, I just don't have much hope of meeting someone and starting a new relationship. So much so that I haven't even tried, except for the one time in my first year of CFS, when I still thought I would recover. I think this is mostly because of my real energy limitations. I really don't have much to spare, and I'm pretty sure dating would take a lot, as it came with a lot of anxiety for me, even before CFS. When I have a tiny bit of precious energy left over after tending to my basic needs, should I spend that on a sure and proven activity, like catching up with an old friend, or spending time in a lovely patch of local bushland? Or should I spend it on a date that might be mediocre at best? (Perhaps I am too pessimistic. But even good feelings like excitement consume energy. And the cfs loan-sharks are vicious when I spend too much of that). I also need to consider the risk of revealing my significant physical vulnerability to strangers, who might not have the best of intentions. 

I think ableism is a factor too. Both from other people and from myself. I think people do judge potential partners on what they can do, not who they are. People like to imagine adventures and projects they can do together. How a relationship will work practically is a significant consideration. Previously, I would've wanted an adventure buddy too. (I still do, just slow, micro adventures!). I'm still dubious of people who stay at home doing nothing, if they have the option of being out and about leading a full, fun, meaningful life. I was an active, outdoors person who did a lot of volunteering, and have only ever been attracted to people who held similar values and verve for life. I struggle to imagine that someone like that would desire a partner with my limitations. And perhaps I am being too close-minded when I can't imagine being attracted to and sharing values with somebody who is voluntarily sedentary. 

There's the possibility of dating someone who is also disabled, and therefore "gets it". But then there's still the limited capacity problem, except on both sides. The number of occasions you are both well enough to meet might be very few. 

I also worry about letting people down if my energy fails me some time in the early stages of a relationship. I did go on one date in 2016, after some long email chats. However shortly after that I got really, really sick and pretty much ghosted the poor fellow. I didn't mean to, CFS just dragged me under a massive pile of glandjy-sludge and brain fog for months. But I still feel bad about it. 

I highly value that my housing and financial situation is currently independent of a romantic partner. However it is tied up with a friend in a home co-ownership arrangement, where I have management responsibilities. This creates a further inflexibility for future relationships. Not to mention I could also lose my dsp if I decided to live with someone. (Yes I am thinking WAY too far ahead here!)

I haven't ruled out unconventional relationships. There are labels for all sorts of sexualities these days, which I think on one hand can make people feel validated and not-alone, and on the other, try to pin something rigid and inflexible on the fluidity and constant unpredictability of the human experience. I've thought about it a lot, and am pretty sure I'm just a boring old heterosexual, which is unfortunate because that both limits my options (already not huge for a post-40-year-old in a small city), and because men are often suffering from unideal patriarchal conditioning (i.e. a lot of them are big doofuses). I also might be something like a "demisexual", in that I'm not into one-night stands, or anything with someone I haven't established enough trust and regard for. (Which takes more time and energy). (Although both these things might be deeply internalised biases from growing up amongst the generalised homophobia of the 1990s, and a sex-negative, "soft"-Christian upbringing).  I have never tried polyamory, but I'm not theoretically against it. I think it actually sounds very sensible, although probably quite emotionally challenging in practice. But right now I am having trouble imagining having enough energy and emotional capacity for one relationship, let alone several! 

So, maybe I do need to untangle how much of my inaction in this field is due to my real physical limitations versus those that are imagined. CFS might always be the boss of my life, but perhaps there are kind, flexible, open-minded, interesting, compatible, geographically-proximal people out there. Or maybe my real, physical limitations are too much, and the majority of people are biased against a disabled partner. I still don't know. It is most likely that I will continue to take no initiative in this field, unless my energy improves somewhat. (Or the perfect person magically appears out of thin air!) 

My life is okay, though. It may be diminished and reduced in possibility. But it is mostly calm, simple and low in emotional turmoil, so I am able to manage my cfs well. It is sometimes lonely. But I have enough friends and support, and I don't always mind my own company. It is infrequent in physical touch. But I can pay for occasional massages, pat dogs and feel the breeze on my skin. This is my lot, for now. Things could be a lot worse. 

Synopsis of 2023, my 8th year of CFS. I'm doing okay.

2023 wasn't remarkably different to the year before, and perhaps barely deserves a blog post. But I think it's still a valuable practice for me to reflect on the year, and try to articulate that in words, even if there's nothing much new to say.

It was my 8th year of Chronic Fatigue Syndrome. The fact that my circumstances have barely changed is also a good thing, as it means nothing has gotten worse. (Cheering emoji!! ). And looking at my step graph, I think I can finally declare I have recovered from the 2020 crash. I can now "go for walks'' again, even though they are always short, flat and slow. I am incredibly grateful for this ability. (Touch beautiful, beautiful woody trees, in the bushland near my house).

(The dip in graph in the middle of the year was a mysterious stomach bug where I went to the emergency department to get checked for appendicitis. This was my worst day, even though the doctors and nurses were so wonderful and kind. The indeterminate waiting for 6 hours in the bright, loud room whilst feeling rotten with a tummy bug, was awful).

I have now had the little van, the snoozuki, for over a year, and it has definitely expanded my geographical range. I went on trips to the stunning East Coast, Cockle Creek and the Peddar dam, among other shorter trips. Less stuff to pack and unpack, and being able to climb in the back for an insta-nap without needing to do any setting-up is incredibly enabling.

Inconveniently, I recently discovered it is possible to lock myself out of the van, at 10:30pm when I got up for a wee. But, I was SO relieved to learn this was possible in a nearby location that was relatively easy to hitch-hike home from (only 15 minutes away). (And that I am a person who wears clothes to bed!). I cannot walk far at all, I need reliable sleep and my body does not have the resilience to cope with mishaps much worse than this.

Lake Pedder, River's Edge and Mt Field van trips 

Every day of the year I had too much to do and not enough energy to do it. The basics of being a human continue to take up most of my capacity. Co-owning a house requires never-ending maintenance, from figuring out what for do about the precariously leaning brick fence and retaining wall, to fixing leaking toilets. The constant dance of sharehousing requires awareness and management of multiple people's cleanliness standards, communication skills, neurodiversities, knowledge, past traumas, experience (or lack of), and triggers. Including my own. But it's been mostly good, and I feel outstandingly fortunate to have a home.

I continued to receive help. Lovely people turned up to another garden bee in October, and mum came every week to help with some more strenuous chores like changing my bedsheets. I had enough support. I am thankful. Not everyone with chronic illness does.

 

The impact of cfs on friendship is a topic I might expand on in another post. My experience of friendship has definitely not remained the same. However, I still feel really lucky to have enough friends. One friend in particular came on almost all my camping trips, where she happily occupied herself doing jigsaws and looking for bugs under bark, while I had naps or went on gentle walks. She is the best.

 

 

Friends doing jigsaws and slow walks at Mt Field 

I kind of co-created a book. I wrote a Facebook post several years ago, of my observations from a few hours spent at a local beach, and Lu, a talented illustrator, who I met through the me/cfs facebook group, was inspired to illustrate it. We sold copies to friends to raise money for Emerge Australia, a me/cfs support and advocacy organisation. Here is a link to the pdf. Donations to Emerge Australia are welcome. 

In other small-scale good news, I had quite a lot of swims and some snorkels, including one where I saw a huge orange octopus. I read over 100 library books and shared my reviews online, listened to some podcasts and watched some good tv. (I especially enjoyed meeting Gina from Alone Australia via the tv. What a woman). I sold some beanies to raise money for good causes, organised some group-birthday-gifts for friends, and I stitched another plant-dyed quilt. I took a lot of photos of our mountain looking pretty, and facilitated the growing of a lot of silverbeet, zucchinis and broadbeans in the garden. I discovered the best sausages ever at the farmers market, where they also sell the best cheese, carrots and empanadas. I finally tried out a hired electric scooter (stand up), but it took too much energy. I continued to do daily yoga and bush sits, exceeding my sit goal of thirty minutes a day by 35% and coming short of my yoga goals of one hour a day by 15%, but I was mostly very disciplined. I also did a lot of slow breathing. This nervous system requires a lot of management!

 

Craft creations, selfie wearing a eco-dyed thermal, and snorkel at Fortescue 

I sold my last bike and some other outdoor adventure gear, which was a bit wrenching. I still get frustrated and sad at times, and have occasional flashes of incongruity. "How is this my life now?". "The last time I was here I climbed that huge mountain with a 25 kg backpack. How is this tiny slope an insurmountable barrier now? I don't even look sick!" I sorely miss the endorphins and stress-release of exercise. I worry about the continued impact of this enforced sedentary life on other aspects of my health. I get pangs of sadness that cfs has not only eliminated my chance of having kids, it has also vastly reduced my ability to interact with children at all (who usually require a lot of energy and are inevitable germ super-spreaders). Or my chances of having a relationship. (An inquiry into how the real limitations of my disability, vrs the ableism of society, vrs my own internalised ableism affects this possibility, also requires a more in depth post.)

Small and slow delights instead of big hills 

I am more vulnerable to anything that veers off-course in my carefully managed life. From events as minor as dishes-conflict in the sharehouse (I cannot easily leave the house to gain space and perspective from conflict, or exercise to deal with stress), to as major as the potential of natural disaster, where people with disabilities ARE statistically more likely to die. People have commented how prepared I am for bushfire evacuation, but I have to be. I cannot rush, I cannot run. (Here is an abc article on this featuring two friends.). 

At the same time as feeling utterly robbed by cfs, and despair for my diminished life, I know I have gained a sense of perspective, and heightened sense of gratitude for small things. I'm proud that I have not become bitter about my lot, and I think the daily gratitude practice helps with this. That, and that I DO have enough support, and am currently existing above the miserable line. (A good attitude only goes so far when your circumstances are rubbish). 

The main problem with being forced to sit still in the bush rather than constantly moving is...... mosquitoes! (That small patch of exposed ankle did not survive)

I didn't try any treatments or diets, other than going on and off ldn. Nothing to report there. I'm still too disillusioned and burned out from the expensive and fruitless treatment marathon in the first few years. And long covid research hasn't come up with the goods yet. (Oh okay, one thing, only because its kind of funny. I tried vibrating my acupressure points for digestion with a small, cheap sex-toy. This has had a noticeably positive effect on my friends digestion, and it did briefly improve my own IBS symptoms, before I gave the borrowed vibrator back after I bought my own. Sadly, mine doesn't work as well. Maybe the vibes aren't right). 

A commentary on 2023 seems callous if I don't mention the state of the world. So, yeah, Shit. I do not know what to do or think about the wars, the climate change, the unsuccessful Voice referendum, or all the rest. I imagine how unbearable life would be in these disaster zones for anyone, let alone those with disabilities or medical conditions. 

Anyhow...., back to me.

I reckon if i counted up the words in my daily gratitude diary, the two most common phrases would've been:

1. "Being okay", and 2. "Was able to....."

The majority of the year I had enough food, money, shelter, stability, support and safety. Enough lack of pain, stress-free time, autonomy, humour, wonder, mental health, and time sitting on the ground in nature. And even if a thing wasn't particularly fun, I was often grateful that I could do it. (Something like fixing the toilet would come into this category!).

(Also "dogs", on any day I met a dog).

So there we go. Not much new to be said. But I have perhaps been more than okay. I know that I remain a very fortunate sick person to have had enough of all those things listed above, and I am very grateful. If you were a person who supported me this year, a really big thank you.