Sometimes I feel lonely and wonder if ‘belonging’ is a goal I should pursue. After all a human being is a herd animal. (Which is evident from the amount of people 🐑🐑🐑 that just blindly follow).
Self acceptance
My train of thoughts brought me to ‘being yourself’, what does that actually mean? And is it really as accepted as it seems?
In my process of self-acceptance I have learned what is causing it to be so difficult for me. Saying you’re chronically ill isn’t enough if you only say it once. People forget quickly and generally assume that everyone is just like them. Of course this is not the case, but it’s only remembered in a theoretical sense. What I mean is, they ‘know’ it, but they just don’t think about it. And in the end, of course, their life is not about you. This makes perfect sense but it is also difficult.
I am chronically ill. I have Multiple Sclerosis. And that sucks. Not only because it doesn’t go away, but also because it’s (mostly) invisible. I have MS symptoms every day. Even on good days. But at these times I won’t mention it because I don’t want to complain and it doesn’t help.
Every day I wake up tired and EVERYTHING costs me more energy than it does a healthy person.
In practice, this means that I have to make choices between my activities. So, am I going to a doctor’s appointment or visit someone tonight? Am I going to vacuum, tidy the kitchen or do the groceries? One of these types of activities per day followed by rest is usually doable.
Stress
Because of my neurodivergent brain, many things also cause me extra stress. For example, telephone calls or unexpected changes in my plans. And stress is disastrous for my MS. If I have too much stress in my life, I get physical issues. My legs become weaker, my balance is off, I also develop cognitive problems and become so exhausted that I can’t actually do anything anymore. Sleeping doesn’t help at this time and my energy bucket, which is already miniature in size and leaking anyway, now seems impossible to fill. Resting is all I can do. However, that is a bit of a challenge when you’re also a carer to others.
These are external stressors, but with MS the stress also comes from within my body, due to inflammation in the central nervous system (spinal cord and brain). It is therefore very important that I focus on anti-inflammatory foods as much as possible. This means avoiding dairy, grains, sugar and processed foods.
Doing this solo is quite a challenge. It requires more planning and energy and that is exactly what I do not have in abundance. On top of this, we also have someone in our household with an eating disorder, which makes preparing only one meal for the whole family impossible.
Another cause of stress is known to most of you and that is the stress around your child. That in itself is of course no different for me than any other parent, although added medical conditions and sensory challenges may sometimes make this a little more intense.
After rereading this, it sound like I’m complaining, but really it’s the reality of my life. Maybe it’s all to do with self acceptance and not so much about belonging.
I’m not quite sure which comes first. Is it belonging, self acceptance or being yourself? Can you belong when you are yourself? I know I have (very few) people where I feel all three are possible, but maybe it doesn’t matter. Ultimately, you can’t accept yourself until you know who you are and I haven’t even figured that out yet.
August last year, so about a year ago, I had an MS relapse which affected my facial muscles and caused stroke-like symptoms. The right side of my face was weak and drooping. It wasn’t an actual stroke, but it did mean that half my face didn’t work as it should. This made talking and swallowing harder. Quite a scary experience. Luckily it improved but my facial muscles are still slightly weaker then they were. This could be permanent, but fortunately it doesn’t affect my talking or swallowing anymore.
Eight days ago, I had my so called follow-up appointment. The reason that it took so long to have the appointment is mainly due to them sending me appointments to see the wrong specialist… TWICE!!
Anyway, for the last month and a half I haven’t been doing well at all. It started when the weather was ‘nice’ and warm and I decided to join my son in the swimming pool to cool down. After a little while I suddenly felt pressure on my head and I needed to get out of the sun, which I did. But since then, I’ve been going through a long stretch of fatigue and also weakness in my legs. I’m not a stranger to fatigue but this fatigue was very extreme. If you are familiar with the spoon theory, I would describe it as in stead of starting with 10 spoons a day, I would have only 2 or 3, or every activity would take 3 or 4 times as much effort (spoons) than before. In practice this meant that I could not do anything without breaking.
Everything took way too much energy. Because of this I spend most of the time in bed. Every time I stood up for more than 5 minutes or so I became dizzy and got out of breath. This meant that even having a short shower was undoable. I’ve kept a diary during this time hoping to get more clarity of any changes in the long run.
It’s only on the 10th of August, more than a month later, that I consider myself ‘a little better’ and decided to finally have a shower, rather than a sponge bath. I felt so good about being able to. However, about 2 and a half hours after taking this shower I wrote in my journal:
“Shower seemed to have been too much. I’ve been resting and feel pretty bad. Extreme fatigue and dizziness when not laying down.”
Even though The shower might have been too much at that time, my energy levels DID slowly improve somewhat. However, I still had leg weakness and I couldn’t stand without starting get dizzy and be short of breath.
This shortness of breath in combination with extreme fatigue, dizziness when standing and/or doing anything had happened before. Once a few years ago and also last April. Both times I had a full check up in A&E and both times they couldn’t find anything wrong with me. Last time, in April, they even told me that my blood test result were pristine and couldn’t have been better. But both times the symptoms eventually faded away.
My neurologist-less appointment
Getting back to my neurologist appointment of eight days ago, I was glad that my husband was there. The state I was in, was still as I describe above, leg weakness and therefore walking really unsteady on my wobbly legs. My balance was also a bit off, but these things tend to come together. And even though I was slightly less fatigued, I still wasn’t able to stand very long without getting dizzy and short of breath. But I made it there.
We (my husband and I) had to wait quite a while to be seen. I expected to see my neurologist, but I was called by someone called Cormac. He seemed ok and I assumed that he was the first stop on the way to the neurologist. Like a triage kind of person. But after a while of him asking questions and me answering and feeling that he didn’t really listen, when I asked some things, he responded with :
“you’re here to see the neurologist, so let’s talk medication”
When I said that I wasn’t necessarily keen on medication, but would like to be informed about the options I was suddenly labeled as ‘resisting’. He did some standard MS tests that I’ve always had when seeing a neurologist. He kept telling me that my gait was off. As if I wasn’t aware!! 😅
And then he looked at my MRI (from a year ago, I might add) and it must have been at least four times that he said that I am
‘very diseased’.
Because all this took a bit of time I asked him when we were going to see the neurologist. Apparently the neurologist was busy with phone appointments. Made me wonder why I had to be there in person then, but anyway 🙄.
After this we were taken to the MS nurse and she was giving me all the info about the medication that was suggested/advised by the neurologist.
You know the one who took a year to see and then was too busy to see me… that one.
So we went home with the info and I read the leaflets. In other blogposts I already written about my view on meds, so I won’t do that again but I can tell you that these suggested meds have a lot of potential side effects and some are fatal.
Reading all this has made me instantly motivated to re-read all my research and plans in notebooks, diaries, Post-its, books etc.
A few of my notebooks and dr. Wahls’ books
Hyperfocus mode = ON
The day after my appointment I possibly had a boost of adrenaline, because even though I knew I was still quite fragile, I did feel ok.
I decided, with my husband’s help this time, to go full on on the Wahls protocol. My aim is to follow the Wahls Paleo Plus, which is the ketogenic type, but if that turns out to be too challenging at times I will be ok with any of the other two, which aren’t keto.
Eating for health is the goal.
So, I started this diet (again) on the 15th of August and I felt really good about. I decided to keep a bullet journal, with all the foods I eat, but also my activities, energy level, exercise, self care, symptoms and feelings I might have during the day.
On the 16th I woke up after having had an 8 hour sleep, feeling quite positive and upbeat. I decided that I would (with help) start reorganizing my fridge. Separate baskets to divide my leafy green, sulphur-rich and coloured vegetables so they can be grabbed easily. I made an easy-to-make-meal plan, so someone else could also make my Wahls approved meal in case I don’t have the energy.
I also felt good enough to help with hanging up some of the washing. However I was very aware that I might be on a mental high and did make sure I still rested after anything I did.
On the 17th, I felt pretty good when waking up. I gave it a 7 out of 10. But I was in my danger zone. I felt good enough to be more active. So I did some household tasks and went shopping for vegetables and some other supplies that I needed for my diet. After all this, my energy in the afternoon had dropped to a 5 out of 10. I still felt positive but also really quite tired.
On the 18th, I woke up feeling pretty good again, 6 or 7 out of 10. I think that this was probably down to having had a good sleep of 8+ hours. In fact I felt good enough to try and use my treadmill again after a very long time. I only did a 10 minute program, but it made me feel quite upbeat and energised.
Mentally this has so far made such a positive difference. I felt more me and a lot lighter in my head. I want to do stuff again and I believe I can.
The Danger zone is very present at this point.
– The Danger Zone: Being at risk of doing too much. This generally happens when my body has to catch up with my mind. And my mind quickly thinks that I’m grand and can do things again when my body is simply not ready yet. –
So to give an idea of my activities on this day:
In the morning: treadmill for 10 minutes, shower, tidy kitchen, make breakfast for the kids, organise my food for the day and I did some drawing.
In the afternoon: I did some painting, made lunch for my son and have a walk (approx. 15 minutes) outside with my husband.
I felt quite relaxed and happy over all. After dinner I did feel quite tired, but not exhausted like before. I had a very early night and went to bed at around 8pm, hoping for a good sleep again.
However, I woke up at 00.45am and wasn’t able to get back to sleep again. Highly frustrated with this I finally gave up trying at 5am and decided that my day had begun and I’ll try and sleep some later. At 7.30am I managed to go back asleep but only for an additional hour and a half.
Bad day
While the last days had been so much better than before, on the 19th my energy levels were really low to the point of feeling nauseous. I guess not surprising after only 4.5 hours of sleep. So today had to be a calm day. A lot of resting and focus on sticking to stay on my diet.
I realised that this is the type of moment, when I’m not doing so good, that I stray from my diet and things go for bad to worse. Often followed by me being unable to get back on track. But because I now have proper support of my awesome family, this didn’t happen. And I’m highly grateful for this.
The day after, I bounced back.
I was trying to be careful though as my experience told me that I was back or maybe still in the danger zone,
It’s now a week after I started being strict on my Wahls diet and (besides that one ‘bad day’) I can honestly say that I haven’t felt this good since ages.
I’ve started using the treadmill again and I’m not feeling exhausted. I do try to fit in moments that help relax me everyday. It’s now re-learning the rhythm that works best for me.
It’s been a little while since my last post and I feel a lot has changed.
I’ve started embracing my creativity again. I find that being creative in general makes my heart happy and my brain relaxed. It’s all very therapeutic.
I’m now learning to make videos / reels of my creative actions and I’m quite enjoying it.
So this morning I woke up to a post of someone in one of my fb groups (full of mothers). She stated proudly that she had finished her Bachelor’s degree while working full time, being a mum to 3 special needs children and trying to be an amazing wife to her husband while she was struggling through a burn-out.
For starters, I don’t think there is a question as to WHY she was dealing with a burn-out 😳.
But besides that, is pushing yourself SO hard really that admirable? You only have so many spoons, so if you do all those things, the spoons will be spread thinner.
Great for her if she was trying to follow her dream of course. I’m all for self development, especially for mothers as we tend to forget ourselves easily it seems.
However… when I saw the course she had been doing, my heart bled for her, but more so for her children.
Applied Science in Psychology in Applied Behavior Analysis. And her plan is to continue studying and pass the exam to become a Board Certified assistant Behavior Analyst. That’s all we need, more ABA people 😡.
Reading her post had my brain going mad. I’ve decided that 1. she herself could not possibly autistic, 2. has no idea what damage ABA caused in autistic people, 3. has never talked (or more importantly listened) to an autistic person about her course.
I would love to let her know my thoughts, was it not for the humongous risk of being attacked by all the other mothers who have been applauding her for achieving her goal. I don’t think I can deal with that kind of negativity right now. Then again, not standing up is ignoring the issue.
Or I could possibly just pm her the following picture and link:
Just a little note to all my readers: I’ve decided to create a facebook page, also called ‘Brainwaffling’ where I will post my (sometimes random) thoughts that haven’t made it into my blogs (yet).
Somehow, it suddenly hit me. I am disabled! There I was, lying in my bed in the middle of the night. I had been asleep and dreaming about this no doubt, but now of course I was wide awake and the brain cogs were turning like mad.
I know that, as an autistic person, I’ve learned to mask very early on, to try and fit in. And I think I became quite good at it. I have pretended my ass off to present as neurotypical. A quirky one, most likely, but not ‘alarming’ to neurotypicals, so I must have been pretty good.
Downside of this was that on the way I’ve lost the best part of me and even people who (thought they) knew me very well had no idea that I struggled a bunch on a daily basis. I’ve also hid behind other people’s skills, to try and avoid extra anxiety but still get whatever it was done. Even though this wasn’t always a conscious decision.
An example of this is when years ago my husband and I were walking around town and a young German speaking girl, probably about 12 years old or so, asked us the way. Keep in mind that I, as a Dutch person, have had German lessons in school and my husband has not. It would be most logical that I would help her out. But I couldn’t! I had all the right words in my head. Actually so clearly that I could almost hear them myself, but I lost the ability to talk at that time. My husband however did what he could to talk to the girl in his (as he called it) pigeon German and using the few Dutch words and lots of hand gestures. And I was just standing there, temporarily mute.
That is definitely a disability right there. I now know that this isn’t uncommon in autistic people, but I can tell you, when this happens it makes you feel extremely inadequate.
While I was lying in my bed, having all these thoughts I also thought about my MS. Most people have heard of MS. However some people still confuse it with a muscle/mobility issue which it is not correct. So for clarity:
Multiple sclerosis (MS) is an autoimmune disease. It is a chronic disease where the immune system mistakenly attacks healthy cells in the myelin, the protective sheath that surrounds nerves in the brain and spinal cord. Damage to the myelin sheath interrupts nerve signals from the brain to other parts of the body.
It is highly unpredictable and affects people differently. Some of the most common symptoms include:
fatigue
vision problems
numbness and tingling
muscle spasms, stiffness and weakness
mobility problems
pain
problems with thinking, learning and planning
depression and anxiety
sexual problems
bladder problems
bowel problems
speech and swallowing difficulties
Quite a few of these symptoms I have or had (and therefore might come back during a flare up. You can also see that a lot of these are invisible symptoms, like fatigue, which is a huge one. The amount of times I’ve heard, ‘yes I’m also very tired’ are countless. Being very tired is not the same as being (MS) fatigued. People start to see the difference a little bit now that there’s more awareness of Long Covid, but I don’t even know if that is the same. But fatigue does look to the outside as ‘tired’, so comments like ‘ maybe you should go to bed early or have a nap’ are common. And saying no to this advice looks like you’re just stubborn or don’t want to be better. However, MS fatigue is not necessarily helped by sleep. I can wake up after a night’s sleep and be as fatigued as when I went to sleep. The comments and lack of understanding have kept me from talking to people about me being fatigued.
But in terms of other invisible symptoms, also problems with thinking, learning and planning is a big one. And because MS is so unpredictable it is a really hard one to deal with.
I know that if I’m under any kind of stress, my MS symptoms show and/or become worse. And with ‘any kind of stress’ I mean physical stress (raised body temperature, flu, inflammation etc.), but especially emotional stress. Emotional stress for me also includes stress that I feel through others. Luckily I have learned to distance myself emotionally from people outside of my direct family better than I used to, but if one of my kids is feeling very stressed, then this can and likely will have an affect on my physical well being.
When dealing with invisible symptoms, that are not understood, it feels easier to hide them. The same way as not going anywhere when my legs temporarily wobble in stead of using crutches or a wheelchair (I can’t even think about that! 😱) And this works to a certain extent, but if you then realize that when you keep doing this it affects your health and your overall well being, you know it’s not an option.
However, that means that you have to admit to having these symptoms and potentially having to face explaining your disability at the risk of not being believed and/or taken seriously. And that thought fills me with lots of anxiety!
Maybe it’s because of my own preconceptions about disabled people. Maybe this is why I do not want to be seen as a disabled person. Maybe I am part of the group of people who actually have this toxic preconception that disabled people are worth less. I don’t see myself as one of these people, but maybe this thought is somewhere in my brain. Or I’m just afraid that people will think of me that way – worth less. Or maybe it’s because I’ve spent all my life to strive for perfectionism and don’t feel disability has a place in that. I really don’t know, but I do know (now) that nobody is perfect and that trying to ignore the fact that I am indeed disabled is possibly the biggest flaw I could have.
When you combine two or more health issues that work against each other, things become tricky.
Like asthma with PDA (Pathological Demand Avoidance, or more accurately: Pervasive Drive for Autonomy).
When your PDA brain shouts ‘don’t YOU tell me what to do!’ or tries to negotiate with you constantly to get out of taking your inhaler when your body is wheezing. It’s a tough gig.
And then there’s the advice. Exercise is good for your asthma. But what if exercise makes you feel worse and your PDA brain won’t let you take (inhaler) precautions? After all, why do you want to do something about it if it’s not even there yet? And… why would I exercise (which I know makes me feel worse) if I can just sit here, which I know doesn’t make me feel worse. Obvious choice.
Of course there is a future concern, because doing less (or nothing) physically will have implications on your fitness and overall well being, but that’s too abstract for the brain to take into account. The NOW seems more important.
If we then throw another condition in the mix, like Hypermobility Syndrome Disorder (HSD), it gets even more interesting. Now we’re looking at advice that requires exercise again, but this time to strengthen the muscles so that it can help the weak connective tissue to do its job. But this exercise isn’t just any exercise. The joints shouldn’t overstretch, which they ‘want’ to do when the connective tissue is weak. And this overstretching can and will lead to subluxations or dislocations of the joints, which is very painful and this repeatedly happening will make the connective tissue even weaker. So gentle exercise is best. Like swimming.
However, it turns out that swimming is not all that great for asthma.
Even though swimming as a training modality has definite benefits for the patient with asthma. These include an increase in aerobic fitness and a decrease in asthma morbidity. There is no conclusive evidence, however, that swim training causes a decrease in the severity or frequency of exercise-induced bronchoconstriction.
Swimming poses two potentially deleterious effects to the patient with asthma.
– One is the exaggerated parasympathetic tone due to the ‘diving reflex’, that has been shown to trigger bronchoconstriction.
– The other is airway irritation because of chlorine and its derivatives. *
Today I read this story about Selma Blair, the actress, about how she is dealing with her MS and the support she received during ‘Dancing with the stars’, and it did something with me.
Previously I had mostly annoying thoughts about Selma Blair and her MS diagnosis, because I didn’t see myself in her. She had symptoms like speech issues and pain. I didn’t really. Until my last flare up where half my mouth temporarily went wonky, but that seems to have resolved mostly. But besides our difference in MS symptoms, I was mostly annoyed with her being so public about it, because I think it created an incorrect picture of what MS is and how it can be effectively treated.
So there she was, all elegant on the red carpet with her cane. Going for stem cell treatment, which seemingly resulted into her being able to take part in ‘Dancing with the stars’.
The image that I got, pretending to be a not chronically ill person, was that MS was treatable and after that you’d be able to get back to ‘normal life’. This of course is total bull.
What people don’t see, and I can only speak for myself, is the fatigue and insecurities that someone with MS deals with. I bet that after a tv performance she’d have to rest for a substantial amount of time, but we don’t see thát of course.
Anyway, after reading that story, I started rethinking some stuff. I realised that I’ve been doing the opposite. I’ve almost embraced the fact that MS is an invisible illness.
I’ve received my diagnosis 21 years ago and I think I am still struggling with truly accepting it. Possibly because it’s such an on and off type of disease for me.
When I have a flare up it’s clear: I’m ill. I literally cannot do certain physical things. I can’t deny it then. People can see it too and I have to fess up. But when I just have a bad day, which is generally triggered by stress, I hide. Because when I hide I don’t have to explain, I don’t have to feel their pity and experience any change of their behaviour. I don’t want people to suddenly take tasks away from me because they think I’m disabled. Even when this might be the case at that time.
For instance, one of my weaknesses that show on a bad day, besides fatigue because that’s never really gone, are my legs. My walking becomes wobbly. I have had crutches for years, yet only a handful of people have ever seen me use them. Why? Because when I need to use them, I just don’t go out. I hide. Something that Selma Blair is not doing.
Crutches accumulating dust
I would like for people I know to understand me better but I know I’m also making it almost impossible for this to happen when I’m not sharing about my illness. My friends know I have MS but not really how that affects my daily life and that of my family. And how I keep all this safely hidden to try and appear normal. Which of course is ridiculous, but I can’t bear the thought of appearing needy or even an inconvenience to anyone. And asking for help? I don’t think I even know how to, without feeling horrible.
I don’t want to seem weak. I don’t want to seem disabled. I don’t want to seem dependent. I don’t want to be different… but I am.
Maybe it’s time to embrace that and work with it, just like Selma has done. I just need to figure out how…
It’s my last day, day 5, of the FMD and I’m looking forward to tomorrow.
It’s not been too bad, but next time I’m definitely going to approach it differently. I’ve noticed some symptoms that I now recognize as an electrolyte imbalance. I think I’ve been dehydrated, although I thought I was drinking enough. I don’t think I’ve done enough to keep my electrolytes balanced.
My symptoms were fairly mild, but noticeable. It started with a headache during day two. Mild but annoying enough. After that, on day 3, day 4 and also this morning, I woke up with a headache. It was easily ignored and dismissed because after my morning coffee (which was probably not the best idea in hindsight) and my usual water (with added Himalayan salt) the headache disappeared.
I did take various supplements, incl. magnesium and potassium, which would also help with this, but I guess it wasn’t quite enough. This morning I noticed muscle cramps and since yesterday I also have very dry eyes. Neither of those are things I generally experience.
So today I’m focusing on electrolytes and see if these symptoms disappear and tomorrow I will start re-feeding.
Brainwaffling 