Abilify and M.E. Part Three: Down and Up

 

The second blog in this series I published in September 2022, but I had actually written it in July 2022 and so it wasn't reflective of how I had been for the whole of August and into September. I said in Abilify and M.E. Part Two: Moving forward:

“I am still pacing and being overly careful. But life is for living and after 15 years of being ill, I think I deserve to have some fun. I could relapse from doing absolutely nothing, so I want to try. I want to try and spend August doing some fun things. I want to make some memories, see my amazing friends and go on adventures, even if that is just going on my mobility scooter”.

 

Sadly I misjudged my newfound energy levels and recovery time. I pushed too hard and after a few days out with friends and family, I came crashing down. I was so unwell,, all my symptoms worsened again and it was very bleak. I was so upset. I had my memories from what I had managed at the end of July and the beginning of August but they seemed fleeting. 

 

I've crashed many many times and each time has caused me to relapse long-term and not recover to where I had been before. However, after I had been stuck in this relapse for several weeks my symptoms had at least balanced out and were similar each day so I decided to up the dose of Abilify to 1.05ml (from 1ml) and after the initial side effects, which I talk about in my first blog post about Abilify, I started to slowly make some progress again and by October I had regained the strength and health that I had achieved before my August crash. This was simply astounding to me. I had never experienced a good recovery from a crash and after nearly 16 years of chronic illness, I could safely say this was not a fluke but one hundred per cent down to the increase of Abilify.

It did remind me of a very powerful lesson. Not to overreach or overstretch myself just because I can. The crash was truly miserable and very scary, and I am not willing to risk it again. Every time I feel like pushing myself just that little bit more to do something I remind myself of what happened and what could happen, just because I got out of it last time with the help of the medication is no guarantee it will work again.

Getting Away

So in the spirit of not pushing things but still trying to enjoy my new found decrease in symptoms I endeavored to move onwards and upwards to better things. I managed a week's holiday in Cornwall with my mum to visit my brother and his girlfriend. I even tried out some great allergy food options which I have written about for this website Cornish Vybes. I was careful to rest before, during and after and although it was a stretch, I remembered not to push once I was starting to overly suffer and I avoided any kind of relapse.

If you would like to see my trip to Cornwall I made a Vlog all about it:

Two Great Days

In November I had another two key moments which were more small markers of improvement for me:

1. I had a day where I felt better than I had done before an operation I had had in August 2021.The operation had knocked me into a bad relapse that I had gotten stuck in before starting on Abilify
2. The second key moment was, with a little help, I used my bread machine to make some Gluten-free bread. I had not been able to do for about 16 months. In 2021, for about 3 months, I had been able to use my bread machine once a week without it causing me too much exacerbation of symptoms. So to be able to do this again was cause for celebration. 

These two things were big markers for me to indicate that I had made a sustained improvement on the Abilify. I was incredibly happy with my progress, sure other people on the drug had made faster improvements but equally there was no guarantee that this medication would of worked at all. I have been on so many medicines over the years that we had high hopes for and none of them had made such a significant difference, even the improvements I had with the FMT treatment had been much less compared to Abilify. This post takes us up to the beginning of November and I plan on writing part four to document my progress from November 2022 to April 2023! Spoiler alert- there is more good news to come!