Eating for health

Some background

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.

So far so good, but I keep learning.

I am disabled!

‘Honey… I am disabled’

‘You’re ok’

‘But I’m still disabled’

‘I know, honey’

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.

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.