The Asthma, PDA and HMS Challenge

To swim or not to swim… that’s the question.

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. *

It’s all a bit of a challenge.

*source: https://pubmed.ncbi.nlm.nih.gov/1470792/

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On a bad day, I hide.

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…

Don’t forget about your electrolytes!

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.

Tricking my brain

Yesterday I started a five day Fasting Mimicking Diet (FMD). I’ve done this kind of thing before and I always seem to feel energised from it, even before the five days are over.

FMD was developed by dr Valter Longo, an Italian-American Cell Biologist and Biogerontologist. It is basically tricking your body into believing that your fasting. The idea is that you eat only a percentage of your normal daily calorie intake for five days. It’s important that the food that you eat is nutrient dense and stays under a certain amount of calories.

As I said, yesterday I started the FMD. This time I used a meal example online from dr. Jockers, https://drjockers.com/fasting-mimicking-diet-benefits/

I was fairly motivated when I started. However during the day this motivation lowered a little and my mind started thinking about ways to not finish the five days. However, I already informed some people that I was doing this, so I also felt I couldn’t just stop. Last night I decided to just go to bed really early, so the day would be a bit shorter. This sort of worked. Until I woke up during the night and couldn’t sleep again until about 3 hrs later. A broken night. Not ideal, but I wasn’t hungry.

This morning I woke up and felt surprisingly ok. A bit tired, but not too bad and still not particularly hungry. Today I’m only eating twice, so not being hungry is helpful. It’s too early to say I’m energised but I do feel quite positive. I have decided to join my son in the gym later on to do some treadmill action.

One of my meals yesterday

Love the diversity

Am I the only person who cringes when reading or hearing the words ‘early intervention’?

Early intervention; It seems to be the most common approach (i.e. treatment) when a young child gets an autism diagnosis.

This morning I read a question online from a neurotypical mother of an autistic child asking for the best intervention for her son, because since he started school this year he had been behaving inappropriately. He had stopped talking, been screaming and banging his head etc. But only in school. At home he was a happy and cooperative child.

To me, it’s clear that the child in question is very stressed in this school environment. I would think that it’s the school, not the child that is the issue here. But (to me) she was clearly looking to change something in the child’s behaviour to make it easier for the school to deal with, hence the question for intervention.

Early intervention: A treatment for autism. 😱

Autism doesn’t require treatment. It requires support. Unfortunately it’s labeled as a disorder, but what it really is, is a difference from the norm. Just like homosexuality used to be labeled as an illness. It’s simply NOT the correct!

And as it isn’t an illness or a disorder, it can’t nor does it need to be fixed and/or cured. Autistic people want just what everybody else wants: have the space to be their authentic selves. If you don’t understand what that means, then that’s ok. You don’t need to.

If you are a decent human being, you just have to be kind and respectful and stop assuming you understand and/or know better. Just like you do with anyone else (I hope).

Stop the prejudice.

Love the diversity. 🌈

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https://en.m.wikipedia.org/wiki/Neurodiversity: “Neurodiversity advocates denounce the framing of neurodevelopmental disorders as requiring medical intervention to “cure” or “fix” them, and instead promote support systems such as inclusion-focused services, accommodations, communication and assistive technologies, occupational training, and independent living support. The intention is for individuals to receive support that honours authentic forms of human diversity, self-expression, and being, rather than treatment which coerces or forces them to adopt normative ideas of normality, or to conform to a clinical ideal.”

To sleep or not to sleep…

Today our youngest and I had planned to meet up with a couple of home ed families, to fill up our social buckets. The plan was that he could play some video games with the other teenagers and I would have chats with their mums. We were both very much looking forward to this.

We’re still very much working on recreating a network of friends here in Ireland and because of my medical issues we had to cancel a few meet ups already. Luckily I’m back being active again now, so we had our first teen meet up last Saturday. Which was great.

Today we had been invited to meet up again, but this morning I was asked to cancel it. My son is struggling with sleep issues, which makes that his sleep shifts his day and night. We already know that melatonin is a common issue in autistic people but this feels like a circadian rhythm issue.

Of course we’ve tried everything that is usually advised to make kids have a good night sleep, good sleep hygiene, winding down, soft lights, no screens before bed, we kept a schedule waking him up at the same time every morning, we even tried giving him melatonin, but nothing really works for him. When we tried, the only difference was that now he had turned into a very grumpy sleep deprived little person, which then affected his food intake and ability to concentrate.

Because of this and the fact that he is not in a system (like school) where he had no choice but get up at a particular time in the morning, we decided that the most important thing was that he got enough sleep. No matter what time of day this was going to be. We saw that this worked. At least now he slept enough.

However, this does mean that there are challenges with appointments that we make. He has some control, but that’s only control about being awake. And that doesn’t mean he can sleep more later, which of course deprives him of sleep all over again and/or makes the day-night shift even more messed up.

It’s complicated.

For example: yesterday, he only woke up at about 5pm, so he’s been awake all through the night. He came to me this morning at about 8.30am asking me to cancel our meeting this afternoon because he felt he could push himself to stay awake until the afternoon. He really needed to sleep. He clearly felt really bad about it, but this is not a choice. We wish it was. He had been really looking forward to meeting up with his new friends, but he’s just not able to.

Fortunately, his friends are very supportive. And we will be invited again.

I am autistic and that’s fine.

It was when we had the second autism diagnosis in our family that I started to seriously wonder if maybe I could also be autistic. This was about 8 years ago now. I recognized a lot of our children’s characteristics, that were now labeled as autistic traits, in me.

I started doing more research online and had various chats with autistic adults, who seemed not surprised in the slightest by me wondering about myself being autistic. I now understand that to autistic people it might have been quite obvious.

Some of the things I recognized specifically was how hard I always find it to make friends. I always waited for someone else to reach out to me and that then followed by me potentially overdoing it and claiming them. I recognize now that this is a sign of my social skills not being neurotypical. I find it hard because I realize that whenever people say something, they might mean something else. It might not be meant literal and if I do take it that way, I’d be wrong. I’ve realised that when this happens, I am being laughed at, so I’ve learned to mask and turn it around as if I meant to make this ‘joke’ and all is good with the world again. You don’t have to explain anything and people just take it as funny. Nothing more and nothing less. This works for me in the moment, but doesn’t make me any wiser.

I clearly do not communicate the same way as neurotypical people. I’d like to believe that I don’t care about that, but I don’t think that’s quite true. Like everyone else, I’d like to belong and I do like to be liked. So I mask.

I’ve also created, quite early on, an image for myself that acts like a protective shield. In the past I’ve been described as someone who did their own thing and didn’t care about what others thought. This was SO not the case. I was desperately trying to fit in and sometimes it got too much. I wasn’t very good at regulating my emotions and would come across and very catty sometimes. Catty because I didn’t know how else to communicate my strong feelings. Feelings that weren’t understood, I felt.

So I tried to adjust to what others deemed acceptable. From a very young age I’ve been observing others and I’ve been learning to copy their behaviour. Subconsciously I took this as ‘normal’ or ‘the right way to behave’, so that I could fit in.

It annoys me that I’m still doing it, because now I know that somewhere along the line I lost myself. I now find it quite hard to reclaim ‘me’ again, because who am I? Where is the little girl who was genuine in her expression.

I guess I’ve always had some sort of outlet in my art, a place where I can be truly myself. However that only works if I’m not looking at other people’s work and I don’t hear any opinions before I’m finished, because then I jump straight into ‘I must not do it right’ and get back to ‘normal’ art. This is not me. I like the unique weirdness. The stuff that nobody would come up with.

I even have this with responding to people. Even on social media, when I feel some post require a compliment or a congratulations, I simply cannot respond with something that’s been said before. When I do, I feel like I’m copying and therefore the other person might think I’m insincere. This is never (!) the case because if I didn’t mean to respond, I wouldn’t.

Another point is probably that I find it quite hard to keep my chats (or blogposts for that matter) small and/or to the point. It just cannot be done. Not effectively anyway.

This makes me come back to what I wanted to say. After two of our kids were diagnosed with autism, I decided I wanted to find out about myself. So I started the ball rolling and this was a very slow ball I have to say… but eventually I got to see a psychologist for an initial assessment. We met and I was asked loads of questions. In the end he said that the second and official assessment would require another waiting list (we’re talking years here!) and if I’d be still interested to go ahead with it as it wouldn’t change anything. A bit odd I thought, because what would have made me lose interest? Anyway, I was put on the next waiting list. Before I left I asked him if he thought that I might be autistic.

His answer: I’d be very surprised if the assessment would show that you weren’t autistic.

After this, we’ve moved house and I would have to start the whole lot again, because I moved out of their area. So I left it there.

Way later I read that a lot of autistic adults do actually self diagnose and that an official diagnosis is only deemed necessary if it helps with getting support services. But for me, I’m good. I know enough. And even though, I have felt like a fraud for a while, I can now honestly say that there’s no doubt:

I am autistic. And that’s just fine.

Loophole dieting

When I started to take control of my health through diet changes I also came across the keto(genic) diet. Together with one of my online friends who was also starting this way of eating we set up a support group online.

I felt strongly about trying the keto diet to increase my health, but I was also aware that this would lead to weight loss. This was a very welcome side effect at the time as I was quite overweight almost touching 100 kg.

It started great. I was very motivated and having the group there, which was growing, was very helpful. And it worked. For weight loss at least. I lost more than 20 kg and felt great about the way I looked. However… it also did something to my mind. In hindsight I realize that there was a shift in focus. I wasn’t really focused on the health benefits anymore, but became obsessed with staying in ketosis and losing weight. And even though a healthy weight is part of being healthy overall, it’s not enough. I found myself eating unhealthy foods, because as long as my carbs stayed low I was happy.

This was a mistake. I now know there is such a thing as DIRTY keto. This means that your staying in ketosis, but the foods your eat aren’t ‘clean’, they don’t feed you; they’re not nutritious. So technically you can eat anything (like processed foods, fast food and sweets etc.) and as long as your carbs stay low enough, you’ll still lose weight.

This is not what I started off aiming for of course. I want to eat to increase my health. In other words, I want to FEED my body, not just fill it.

When I was reading more about keto I came across a lot of stories that stated that keto was unhealthy and unsustainable. Apparently you’d be lacking vitamins and you’d be eating bacon all day and no vegetables etc. This was not my experience from other stories.

This is when I understood that the word ‘ketogenic’ doesn’t really mean anything more than ‘producing ketones’. It doesn’t say much about the quality of food you eat. This was not what I was looking for.

I became more and more aware that a lot of people when following a jet diet were more focused on weight loss, rather than on healthy eating. I saw them ask for alternatives for things like bread and pasta etc. There’s nothing wrong with looking for new recipes but to me this feels like loophole dieting. Looking for loopholes by using things that will minimize your need for change.

And it’s this change that I needed if I want to work on my health. It’s was only way later that I realised that the diet that I started off with in 2000-and-something, the Wahls Paleo Plus, is actually also a ketogenic diet. This diet is basically meat and veg and not based on weight loss but very focused on getting enough vitamins and minerals into your body. Variety and colourful vegetables is key. So that’s what I’m going for.

One of my meals: salmon, kale, mushrooms and tomato, cooked in coconut oil

My choice of medicine

Today I’m focusing on food. During my last hospital stay I had a small chat with some medical professional about my future. I was told that they wanted me to start taking medication because of my relapse. I know that it is advised that people with relapsing remitting MS (RRMS) take disease modifying drugs ((DMTs), which I did, soon after my diagnosis in 2001. I injected myself three times a week. And for me, it was hell. Mentally it didn’t work for me. My quality of life was heavily affected and after a few months, I decided to stop.

At that time there weren’t any suitable oral DMTs, so I started looking at other ways to try and look after my health. Since then things have changed and when the oral DMTs became available I was offered them. However, by then I had done a lot of research myself and had come across an American medical doctor, dr. Terry Wahls, who also has Multiple Sclerosis. She was in a much worse state than myself. In search of finding alternative ways to improve her health she ended up looking closely at what she ate and what products she used in her home. This resulted in a diet and lifestyle regime that has changed her life. Now she is working again and very much part of her community, which is a world of difference.

When I came across dr. Wahls’ personal story first I was very skeptical. My first thoughts were ‘Sure! This is just one of those exaggerated American stories. Why would it not be world news if this would work?’

I think I now know why this isn’t well known around the world and why it’s not even common knowledge with medical staff who deal with MS patients. My cynical mind says that it’s got to do with money. It not very different from why obesity is still an increasing problem. Anyway, I could rant away about my views on why the money focus is ruining people’s health, but my blog would then go a very different direction.

It baffles me that medical staff and especially an MS nurse would advocate a general ‘healthy’ diet, which includes things like dairy, sugars and grains. These things are known to encourage inflammation, which is the last thing you want. Especially if you have MS or another chronic illness.

So, back to food. Since my diagnosis, I’ve tried different eating diets/regimes. These included Paleo, AIP (Auto immune Protocol), Wahls Protocol, Ketogenic Diet and intermittent Fasting. All of them showed improvement in my MS symptoms, but when I started to be strict on the Wahls Paleo Plus (which is the third stage of the Wahls Protocol), I noticed the most improvements. Especially my fatigue, which has been a major issue for me since my diagnosis, was so much less.

I’ll give you an idea of what this diet (and lifestyle) means for me on a daily basis:

1. Lots of vegetables (6 to 9 cups in total per day), but they are divided into three equal volumes of: sulphur-rich veg, (dark) green veg and colourful vegetables.

2. Quality protein, grass-fed meat, offal, wild-caught fish, organic poultry etc.

3. Quality fats. I use mainly coconut oil, coconut milk and cream but bacon fat, lard and other animal fats are ok too. As well as olive oil (for salads).

There are some other things that I can add to my diet as well like nuts and seeds.

I generally like to focus on what I CAN eat rather than what I can’t, but to make the picture a bit more complete, here are some things that are no longer in my diet: – Grains (including rice and corn), – Dairy, – Legumes (including peanuts) and – Sugar.

It took some time to get used to not eating bread, pasta, rice etc., but cheese was the worst. I think it also helped me to not find replacements for particular things, like bread, because that made me still crave the ‘real thing’. I now describe my diet more or less as ‘just meat and veg’ and that seems to click in my own head, which makes things easier.

I’m posting a picture of one of my meals and honestly it was pretty delicious.

Steak with cauliflower, kale, mushrooms and courgette, cooked in coconut oil

Just to be clear, I’m not against medication. I’m still in search of all the information with regards to DMTs and other meds to deal with MS symptoms. But I want to do this in a manner that feels good to me. I do not want to feel forced to take something that might (or might not) work. I want to get the facts about possible treatments objectively and stay in the driving seat with regards to decisions about my health.

For now, it means I’m focusing on my food intake and on lowering my stress levels wherever I can.

Recovery time struggles

After my relapse 2 weeks ago I’m still recovering. Even though my brain thinks I should be getting up and taking part of life again. In my last post I mentioned that I’m in the danger zone. This turns out to be very true. Also, I must be a very slow learner (or just plain stubborn).

So far I’ve taken two days in a row to put some IKEA drawers for our new kitchen together. My reason: I’m really enjoying it (yes, I really do 🤩) and it gives me mental energy. This is true but it’s also mentally quite tiring. Not sure if it was necessarily a good or bad decision, but I do know that when I start something fun, I have difficulty stopping. I don’t see when it’s getting too much and only realize that I should have stopped when I’m already breaking.

This also happened when a few days after coming home, I wanted to try and have a little walk. I walked with my lovely husband for less than 10 minutes. He (not me) then suggested to go back and I had to stop on the way back because it was simply too much. Only then I realized I’d gone too far. I also forgot that we still had to go back of course. 🙄

Similar thing with going to the shop. It’s just too tiring too quickly.

It does get really upsetting. My family has been absolutely lovely and especially my husband has been the best. He’s been very patient with me and has been doing his best trying to find ways to basically telling me to sit down and rest and stop doing anything, without upsetting me or making me feel like a nuisance, because that is how I feel at the moment. But saying that, I’m trying hard to change my perception of it all.

So now we (read my husband and son) have created an area in our garage where I can sit and be creative again. It’s been well overdue that I had a space like this and it’s very basic, but it’s there. A table, a chair, paint etc and some privacy. I started last week but that was still on a little table outside. Now I have what I’d like to call the start of my own studio 👩🏻‍🎨. It’s part of my stress management.

Where the creative magic happens 😅