Once more, I am participating in A Chronic Voice’s monthly linkup.

words: financing, exchanging, controlling, motivating, and capturing.

I’m currently in an odd place in my life where several aspects of my life are going incredibly well, but I am also experiencing symptoms that have been and could be relatively debilitating. I’m working on keeping these things balanced, and doing my best to keep enjoying everything I possibly can, since I honestly don’t think that anything can be done to correct my symptoms.

Financing our treatment and our fun with symptoms and fatigue

It feels like with chronic illness, we often are financing our positive experiences through ‘saving energy’ for the event, then ‘borrowing energy’ from our future selves.

For example, sometimes we decide to go to a special event – a day at the beach, a wedding, or going out for dinner, knowing that the next day(or next week) we will pay for it in increased symptoms, exhaustion, or pain.  We consciously decide that it’s worth the risk, and do it knowing the possible cost.  

I’ve done this repeatedly and I’m sure I’m not alone.  And I generally have found it a worthwhile exchange that has left me with lovely memories of the event to comfort me while dealing with the symptoms, exhaustion or whatever the other cost was for going.  

I think it’s important to recognize that this is usually our own choice  I’m in favor of consciously deciding when it’s an exchange worth making, rather than taking the action because it’s always been expected or us, or because accepting or offering is an instinctual or knee-jerk reaction.  

Spending time with friends is awesome – but you may want them to understand what that time costs you!
image by Disabled and here (https://affecttheverb.com/disabledandhere/)

We do need to create an energy budget for ourselves and consider what’s worth the cost and what isn’t.  We need to recognize that choosing to do something today will affect what we can do tomorrow and may affect what we can do next week.  

I just think that instead of focusing on it as a limitation, instead, we focus on it as a measurement of value.  It definitely can be worth extra hours resting to have lunch with a friend. It’s often worth a week or two of taking it easy to participate in a family event.  

So acknowledge the cost to yourself, and as appropriate share it with your friends and family.  It’s not about having people feel guilty, but it is about giving others an understanding about what your current situation is and how much energy it takes to go out, participate in events, or simply to feel like you can participate in society.

 Examples of this: ‘I’m going to be sleeping for a week, but it was worth it to see you’.  ‘I really want to go, but I scheduled to a doctor’s appointment that day months ago and can’t do both.’  I’ll also often make statements like ‘I’d love to go, but I know I would be symptomatic during it – will you be okay with that/can you (activity to help make it easier on me)’.

It’s worked well, since I’m making it clear that I am interested in the event and in spending time with my friend, but am aware of my own limitations. They then are given a choice: do they want the time with me(shakes and all) or are my limitations more than they can handle?

I want my friends and family to know that I’m interested and want to participate, but I also want them to respect my limitations. I make sure that I’m the one who decides, as much as possible, if I’m willing to finance that particular moment with those particular people, or if currently that’s an exchange I’m not willing to make.

Exchanging symptoms with Functional Neurological Disorder(FND)

As I stated above, we are, consciously or unconsciously, exchanging our symptoms or energy in order to have experiences we value.  

With FND, I also often end up exchanging symptoms that can be managed for new and different symptoms which require different efforts, and may not be treatable.

With FND, the only faulty wiring is within my brain.  Even though my symptoms are often in various parts of my body, all of them are caused by signals from my brain.  

This is why FND/conversion symptoms can jump around and affect different body parts and cause dramatically different symptoms.  

When I participated in the MoRe program, I made huge strides – regaining the ‘warning’ system so I would know if I was approaching symptomatic in an unsafe setting(like legs collapsing while climbing stairs), developed much better physical control over symptom expression(I could pause and center, then walk normally, instead of trying to keep moving forward despite my knee refusing to bend or other abnormalities), and greatly reduced how often my movement symptoms occurred.

However, there was a darker side to this exchange.  Partway through the program, I started wetting myself with no awareness it was happening.  I’d be working with my PT on my exercise and come back to my hospital room to find that my pads were soaked in urine.  

I started having these quarter-sized sections of my back feel like they were asleep, with this uncomfortable electrical feeling in that little space.  

When I got home, I discovered that my left lower leg felt numb, sometimes painful on the outside of my calf.  

Was it worth it?  Absolutely.  

But now, over two years after treatment, I’m having more symptoms that simply aren’t treatable.  

For the better part of the past month every time I eat or drink anything, my lower teeth hurt.  The pain is worst when there’s a larger temperature difference between my mouth and whatever I’m eating. 

I made the mistake of ordering pho last week…each sip of broth sent a bolt of pain through me.

The hardest was eating hot food while drinking ice-cold water. The easiest is drinking room temperature water through a straw(so less touches my lower front teeth) and eating sushi or other room-temperature food, mostly chewing with my back teeth.  

I checked in with my dentist.  My teeth are fine, just for whatever reason, they’re super sensitive.  I’m going to be picking up toothpaste for sensitive teeth soon, but generally, stuff like this passes after a week or two.  I’m in week 4 and just hoping that it’ll end soon.  

There’s no treatment, no solution, just this kind of suggestion that I tough it out.

The same is true of the numbness in my left leg.  Sometimes it’s almost gone, and other times it flares into this excruciating pain that takes up much of my attention. 

My massage therapist works on relaxing the tense muscles in that leg a lot, but the numbness seems to always be there, except when it’s pain.  

I’ve had a nerve conduction test done in the area and there’s no indication of any physical damage or problems, so all I can do is live with it.

Controlling my bladder

I have struggled with controlling my bladder for most of my adult life.  Loss of control was one of my earliest FND symptoms after my last remission.  I went through a period of being unable to relax my muscles enough to pee, which eventually turned into constant urgency and trouble holding my urine.  

I was able to regain most of that control through using a pelvic floor PT, and for close to 6 years, I wore pads almost exclusively to reduce my own anxiety, rather than to catch drips or leaks.  I had learned that if I had a pad on, I didn’t worry about leaking, and so I didn’t leak.

Participating in the MoRe program brought that symptom back, only worse, because now instead of feeling the urgency, I just lose control without being aware of it.  

It became especially severe in June, when I was participating in Pride marches, where bathrooms weren’t easy to come by. Each march, I’d start dry and end wet, with no idea when it happened.

In some ways, not having control is emotionally easier than the urgency, but I wouldn’t wish either experience on anybody!

I spent most of the past 3 years working regularly with the same pelvic floor PT, and while my muscle tone and strength are much improved, the unconscious loss of control has returned and worsened, to the point where last week she and I agreed that I should take a break from her treatment program because it couldn’t help my current problems.

Having to surrender control after all this time and effort hurts.  But I don’t think there’s another alternative.  

On the positive side, I have pads to wear in my underwear, am mostly beyond embarrassment, and have learned that the pads soak up the urine scent so by wearing clothes that don’t indicate their dampness, nobody else needs to know what happened.  

Through that combination(and bringing along extra pads most everywhere I go), I’ve been able to keep enjoying myself with friends, staying social, and participating in the marches and social opportunities anyway. It’s extremely frustrating that this problem has re-emerged and that there doesn’t appear to be anything to be done to help improve the situation.

Motivating myself on the medical front

I am struggling a bit on staying motivated in treatment.  The pain and sensory symptoms don’t have a treatment process that works, and the years that I have invested in improving my ability to manage certain symptoms seem to have been for naught, as my new symptoms seem to be overriding all of my hard-won control.

It’s a struggle to feel positive about seeing doctors or finding new treatments when everything I’m reading indicates that the symptoms that bother me most simply aren’t treatable, and cannot be managed.  

I’m not trying anything new for a while, because for now it feels counterproductive.

My neurologist runs a PT/OT program that I could use at any point, but I’m worried that this time, the benefits(improved control of movement symptoms) would be outweighed by the costs(untreatable sensory symptoms and lack of awareness of bodily control).  

This worry appears to be legitimate and appropriate, but I’ll be double-checking with my neurologist when I see him in the fall.

In the meantime, while I am struggling to motivate myself in terms of medical care, I can still choose to carry though on other aspects of my self-care (like meditation, mindfulness, regular exercise, reasonable food choices, and taking my medication daily).

I’m not really looking for new treatments or additional appointments right now. In living with my FND so long, I’ve learned that sometimes any particular thing that might help me becomes more harmful than useful, and the best thing I can do is back away and give myself a break from the topic.

So, for the first time in a few years, I’m trying to give myself a break on my pelvic floor and kegel exercises. I’m not researching additional treatment options, and I’m not adding in more medical appointments than I absolutely need.

I like my new PCP, but don’t need to see her unless I get sick or otherwise need her expertise. I’m not seeing a PT. I’ll keep checking in with my neurologist, but I’m not going to seek out extra help. I’ll keep doing my necessities(like medication management), but for now, my focus is just on living with my symptoms, not ‘fixing’ them.

Capturing the positives

Other aspects of my life are going amazingly well, so I am doing my best to focus on that.  

It’s summer and the weather is gorgeous.  I’m getting time in with my sister and her children, getting time with loving family members and playing with my nieces and nephews.  

The stresses with my mother earlier this year have died down, and so far the time I’ve spent with her have been low stress and she is acting more supportive and less demanding.

My time with my bi community has been wonderful, and more often than twice a month!  After the marches in June, we’re doing monthly picnics, hosting drink nights, participated in the disability pride parade, and I basically have excellent reasons to go into the city every week or two just in regards to birequest!  

Al and I have straightened out his medical needs, made the necessary appointments, and are enjoying time together and with our cats.  We’re both in additional relationships(which is a minor miracle in itself), and both partners seem to be positive influences on our lives.  We’ve also been enjoying the beach together and enjoying time with our families.

Rorschach, derping (forgetting to put his tongue back in his mouth)

My relationship with Kawa is going well – we’re spending quality extended time together at least every other week, and are enjoying our time exploring the city together.  

I’m also building up this website and the associated business.  In between all the amazing social stuff I’ve been doing this summer, I also took the time to work with ‘building a fluid foundation’ and do their business development program.  

I am going to offer coaching sessions on medical or social welfare needs to those who are interested and plan to build a series of courses on similar topics.  

My social life and my business life are really taking off, I have a healthy relationship with my family and my partners, and I’m in a good state of mind. I have a stable enough income that I can maintain my housing and basic needs indefinitely.

I have a lot to be grateful for, and am doing my best to focus on that, and enjoy all the things that are going right in my life now.  

I’m grateful for all that I have, and hopeful about my future, even if I keep having untreatable symptoms.

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16 Comments

  1. You are right we are always thinking about the value of an experience to know whether we want to pay the price and cost of it. Which is fine. Some things are well worth the cost. Some are not. Some the consequences are low some a lot higher… so the value should be higher. It is a balancing game.

  2. Great to hear the pads have let you go out on marches 🙂 something i had done on a topic that meant something to me when i was more able to.

    1. Naomi,
      thanks! I keep doing my best to participate in the things I value – it’s just a bit frustrating when the cost of doing so increases after I do what I need to to improve my situation!

  3. Love your take on this month’s prompts, Alison, especially the energy budget illustration – so good cos it’s so so true. It’s a difficult skill to master (and there is no consideration or consistency from said ‘enemy’!), and it gets exhausting calculating and recalibrating every morning, afternoon, and night. Literally. Sending love x

    1. Sheryl,
      Yes, it’s so painfully true! We can’t ever do more than estimate the cost, and we can easily be ‘off’ either way. That’s why I try to prepare my friends for the possibilities, and then throw myself into my activities after I have decided I am doing so. I hate feeling fragile, so I do my best not to. Recalibration takes spoons too!
      Thanks so much for your great work!

  4. untreatable symptoms are the pits, but it sounds like you are feeling happy in yourself which is always a big bonus. I too have a neurological disorder where my body refuses to do what my brain wants it to do. so infuriating.

    1. Thanks for the empathy!! Being happy with yourself can be a never-ending struggle. I do my best to maintain a balance, but it isn’t always easy. Wishing you the best on managing your symptoms!

  5. It sounds like you are taking all the right steps towards managing your condition rather than submitting to it. Well done on learning your boundaries in terms of social activities. I have a similar issue with my eye condition. Before the smoking ban here in the UK, I knew that I would be in a lot of pain if I went out to a pub with my friends. I also have to assess whether I want to wear make-up or not for an event, and ensure I take lots of eye drops everywhere I go, and my prescription sunglasses. It takes a lot more planning for someone with chronic health conditions to go out anywhere!

    1. I utterly understand! There are always a few extra variables (sometimes many) that can be deal breakers for your time out. I feel fortunate that I never got into the habit of wearing makeup, so that just isn’t a consideration! I’m glad going to the pub is easier for you now, and it sounds like you know what your must-haves are!

  6. Loving your insights and inputs related to this month’s prompts. Totally agree about having to learn your boundaries when it comes to social activities.

    1. Laura,
      Absolutely! I really value recognizing limits and communicating about needs. I think it’s really important for close friends and family to understand at least some of the costs involved and be more empathetic!

    1. Georgina,
      Thanks so much!! FND symptom shifts can be so frustrating, because you just don’t know what will be affected next!
      Thanks so much for the compliment…Al and I love our kitties a lot and know they are adorable!

  7. Hello again Allison

    Another brilliant post that eloquently describes many of the challenges faced by those living with FND. You are doing such a great job at highlighting this debilitating disorder to so many people.

    1. Rhiann – thank you so much! I’m doing my best to share myself and my journey while offering support to everybody else managing their health issues!

      It’s such a strange condition and still so poorly understood, even by doctors, that I’m doing my best to help make sure that others know and can understand how it works!

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