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!

 

Abilify and M.E. Part Two: Moving Forward

The last blog left off in a place of hope and positivity. The initial benefits were small but significant to me. However, I have tried many medications that have made small improvements to my quality of life but have not progressed much further, so it's always an emotional roller coaster trying a new medication, especially one that comes with the potential of huge recovery but also only small improvements.

July Update

I am pleased to be reporting that alongside easing my daily symptoms, and apparently reducing my post-exertional malaise and delayed post-exertional malaise, the Abilify allowed me to go on a day out with my friend. To explain what a momentous occasion this was I have to take you back two and a bit years ago first. In 2019, it was the first year that it was easy to apply for wheelchair tickets for the Wimbledon Tennis Championships. So I applied, hoping that if I won tickets, I would have made some health improvements by July 2020. Sadly my health continued to decline and when I found out I had got the tickets I was pretty sure I would be unable to attend as I had become completely housebound. Then covid struck and luckily for me the tickets were re-issued for July 2022! When I was offered them again in February 2022 I still was not sure if I would make it but I bought them knowing I could return them if I needed to. Fast forward to May 2022, I tentatively asked one of my best friends if she would like to go with me. I was still at the beginning of the Abilify and was a bit all over the place! Slowly but surely, as you saw in my last blog, I started to feel a bit stronger and by the time I got to the day of my tickets, I had rested up in preparation and felt like the Abilify was working well enough to let me go. And so, I did!

 

I had tickets to Court One and saw all three matches. It was thrilling. I even managed to feel present and deal with all the flares of my symptoms in a fairly calm manner. Now, I cannot say there were no serious consequences. I could barely speak for several days and had to eat lying down, amongst other things like needing help to get to the bathroom! But the amazing thing was my worst day hit me on day 2. Day 3 was as bad, but NOT worse! Day 3 is usually when the delayed PEM hits the worst. Then from there every two days I progressively got better and exactly two weeks later I had recovered. To give you some context this was incredible because usually a day like Wimbledon would have taken a full 4 weeks to recover from and that had been the status quo for years! This recovery period is unheard of and I am still on a high from it.

 

But what happened next I hear you ask? Was that a fluke, can you repeat it?

Well, no, I couldn't then repeat such a long intensive day out just because I was fully recovered. I know from experience that boom and bust must be rarely attempted, and although my body had coped better than expected (I had laid aside 4 weeks to recover just in case), I needed to now see if I could build up my activity levels slowly after some rest time. The thing I did not expect was my body continued to feel a little bit better and 3 weeks after my day out I felt better than before I went. Enough that for a few days in a row I could lie in my chair in my room for a little while in the afternoon.

I call this indoor sunbathing!

 

After a couple of days I found I could also have my blind up a while too whilst I lay in my chair.

 

Instagram

These small 'wins' like lying in my chair and having the blind open mean more to me than my big day out. This is because they show real progress, adding these things into my weekly routine without suffering huge payback and having to recover is a true mark of the improvement I feel on Abilify. Five months in, I probably could not hope for a better outcome. So far, so good.

 

A small adventure

Well, after being on Abilify for such a long time and not pushing myself at all (apart from Wimbledon) and trialling sitting in my chair, my body felt strong enough to try my mobility scooter out again. Although I had tentatively planned to do it, I was only going to do it if I felt I could and well I did. My dad came over and we decided to take a trip to the local pub for lunch as I had a week and a half without any in-person, zoom or phone appointments. I could prioritize my social life and do something spontaneous for once.

Here are some details of my little adventure

💎Time on scooter: 10-minute round trip
💎Walking: A few steps with my sticks from my scooter to the outside table as there was no drop curb to the marquee area of the local pub. My hips suffered a lot, but only took a couple of days for the pain to subside (which is amazing).
💎Time at Pub: 2 hours
💎Recovery Time: On day 3 I was starting to recover!
💎Did I enjoy it: Loved it. I mostly loved the freedom of being well enough to go on my scooter and not be driven or pushed in my wheelchair.
💎Could I start to do more like this: Yes, absolutely, I hope so!

The amazing thing is I even managed to make a short Vlog about my adventures in July.

If you would like to check it out, here is my Youtube channel.

 

What now?

I have been weighing up how slowly I should build my activity. It has been 5 months, and for 4 of those months, I did NOT increase my activity levels even though my symptoms had eased. I had a year and a half of being so ill that I was completely housebound and then another 11 months of only leaving the house for an operation and subsequent appointments. Is there a risk of the Abilify stopping working in the future? By all accounts, yes, but I have not been one of the people that pushed and then ended up crashing as soon as felt some relief. 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. It is so hard to accept that I deserve this. I am so hard on myself, but I am learning to ignore that inner critic, and let myself do lovely things rather than using precious energy reserves on countless appointments. I will still have home appointments, phone appointments and video appointments for next month but I refuse to go too far away for draining in-person appointments for a while.

 

The dosage

I have stuck at 1ml for over 60 days. Not because I think this is my sweet spot but because I wanted to first make sure I was not suffering from side effects for Wimbledon and then I need time to recover. Then there have been some other things going on that have meant it has not been appropriate to go up to 1.05ml. I am doing well on 1ml but I feel soon I will start to build the dose again just to see what happens.

Tips

In my first blog about Abilify, I had a section on tips. I stand by all of them but I have two more:

💎 Buy your Abilify from Dickson Chemist. After being ripped off by boots at their self-proclaimed competitive price of £130, I sent my next private prescription off to Dickson Chemist and I got TWO BOTTLES for £23.61! Make sure you send it by recorded or signed for delivery as my first prescription got lost in the post!

💎 Spread the dosing out even further, this is a marathon, not a sprint and taxing your body with constant side effects too close together is not going to help your recovery!