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.