If you are new to my blog, my name is Donna and I have lived with Fibromyalgia, CFS and Lyme Disease for a number of years. In October/November of 2017, I received stem cell treatment at Infusio in Frankfurt. I’ve been documenting my treatment and progress on this blog.
Find all of my Infusio posts here.
It’s now been over 10 months since I received my stem cell treatment for my Lyme Disease and Fibromyalgia at Infusio, Frankfurt. I feel like I say this every month but time is just flying by!
So, how has the past month been for me?
You may recall that in my 9-month post stem cell treatment update I chatted a lot about dealing with neurological healing symptoms again. When stem cells repair neurological damage, this can cause some unpleasant symptoms to flare up.
I had mentioned that I felt like I had overdone things and that I should be taking things a bit easier. Well, I didn’t actually listen to my own advice and I ended up doing quite a bit of exercise instead!
The good thing, though, is that this actually helped me.
Exercise Helps With My Neurological Healing Symptoms
I don’t think I’ve yet mentioned this in my updates but I have become completely obsessed with a VR game called Beat Saber. It’s essentially a virtual reality rhythm game where you hit blocks with light sabres in time to music.
It’s a lot of fun and I can get totally lost playing this game. It’s actually a really good work out and I swear this game is single-handedly getting me fit!
One of our friends came to stay with us and we ended up playing Beat Saber for hours over the weekend.
I started the weekend feeling a bit tired and run down. And, ended it feeling a heck of a lot better.
This really just confirmed to me that the symptoms I was experiencing (fatigue, feeling flu-like and feeling like I had a lot of pressure in my head) were likely due to neuro healing. Exercise has definitely been an ally in dealing with these symptoms.
Adjusting To Being ABle TO Exercise Again
Which is bizarre to me and has taken some getting used to. Particularly as the symptoms of neuro healing can feel very similar to typical Lyme or CFS symptoms at times.
The weirdest part has been that its cardio exercise that helps the most. Something that would have been impossible for me before and would have caused huge crashes.
Given I had issues with my autonomic nervous system and that I used to suffer badly from exercise intolerance and post-exertion malaise, it’s been quite the adjustment realising and accepting that exercise now helps me.
Learning To Trust My Body Again
I am trusting my body more now and I find that if I stay in tune with it, I know when I need to rest versus when I need to get moving. You may be wondering how I know and it’s really just been a case of trial and error.
If I’m unsure, I know within a few minutes if exercise has been the right thing or not going by how my body responds.
Getting Behind The WHeel Again
After that weekend, I felt much better. So much so, I ticked off another achievement. I started driving again.
Only 5 minutes here and there when I felt up to it but this was huge for me.
I gave up driving when I fell sick. Since then, there has been the very rare occasion where I’d have no option but to drive.
However, it was like information overload and my poor brain couldn’t handle it. I would crash badly afterwards! So I avoided it at all costs as I just didn’t feel safe behind the wheel.
To be able to drive again and manage to do it has been wonderful. Though I’m not doing it every day, it’s been so nice to regain a little bit of independence back.
Regaining a Little Independence
Speaking of independence, my parents went away for a couple of days at the end of August and this was the first time they have gone away and not had to worry about me.
Previously, whenever they went on holiday we needed to organise help with walking my dog, Oscar. And, my mum would batch make soup for me so I didn’t have to worry about cooking lunch for myself.
This time, I didn’t need any help and my parents didn’t need to worry about leaving me. I was able to drive myself to the park and walk Oscar on my own.
My mum still made me soup for my lunch as she’s the best and likes to look after me, but I would have been fine to make lunch myself.
Having Issues With Hormones
Unfortunately, I then had another down week. As I mentioned in my 9-month update, I believe I’ve been having issues with my hormones.
And, my hormones yet again kicked my ass a bit this month. I spent around 10 days feeling exhausted, nauseous, headachey and my mood was all over the place with bad anxiety.
If you have followed my blog for a while, you will know that I am a big fan of CBD products and I’ve found the Nganics CBD oil really helps to calm me and a bonus is that it’s also improved the quality of my sleep too.
I’ve also had my progesterone and oestrogen tested through Medichecks and I have sent these to Infusio to be looked at. I’m waiting to hear back and I hope there might be something I can do to settle these symptoms. It really sucks to have to write off a week or more each month.
A Trip Away To Disneyland Paris
Thankfully, I was in top form the following week. Which was good timing as I went away for a few days.
We had a trip away to Disneyland Paris and it was so much fun! We stayed at Villages Nature, which is a Center Parcs near to the Disneyland parks.
So we spent a couple of days in the Disney parks and had a day in between which we spent exploring Villages Nature. There was an incredible pool with water slides at Villages Nature, which was a definite highlight.
Visiting Disney held a lot of significance for me
The last time I visited a Disney Park was in California in 2014.
This was before my health completely nose-dived and I was still in denial about how much I was struggling. I found it difficult to accept help because I felt like a fraud doing so.
On that trip to Disney, though, I realised I did need help. It was the first time I used a mobility scooter because I was struggling to walk.
My health would decline significantly after that trip and what followed was some of the most difficult and challenging points in my life. I always hoped I’d regain my health but I honestly didn’t know if it would ever be possible.
Returning to Disney Without a Scooter or Wheelchair
Fast forward four years and I was back at Disney on my own two feet. The first day we were there we spent the entire day in the parks; from 9.30am-9.30pm so that we could see the Illuminations show at night.
We had planned to go back to our accommodation for a rest part of the way through the day. In the end, I decided against this though.
It may sound silly but I knew if I stopped and went for a proper nap in bed, I probably wouldn’t be getting back up again!
It was challenging at times through the day but we made sure to have plenty of stops to rest and refuel. I also managed to sneak in the odd power nap, which helped!
However, the biggest take away for me about the day was that I was mostly on par with everyone else. They were just as tired out as me at times.
I didn’t at any point feel like “the sick one”. In fact, chronic illness never really entered my mind at all.
I have to say I was in awe at how well my body responded to rest and how I managed to recoup some energy by stopping for rest breaks and eating regularly.
I also didn’t experience post-exertion malaise at all during this trip and, though I felt tired, I was ready for the day ahead each morning. That said, my quads and feet were killing me at points!!
I did have to take some ibuprofen to help with my achy muscles on our last day. But, that’s not really a negative given that I walked 66k steps over the three days!
Which blows my mind.
It was only a year ago that I visited another theme park in the UK and during that trip, I relied on the use of my wheelchair. The difference in me between then and now is unreal.
We Each Progress At Different Rates
I also have to say that I remember reading about someone who had been to Infusio and visited Disney after their 100 days post stem cells. When I was at my 100 days I felt pretty terrible!
I remember making the comparison and upsetting myself.
It’s a reminder that we don’t all progress at the same rate and that slower isn’t necessarily a bad thing. If someone had told me at my 100 days that I’d be visiting Disneyland by month 10 there’s no way I would have believed that I’d manage to do it.
But, here I am. It goes to show we never know what’s around the corner for us.
I’ve now been home from Disney for almost a week. It’s a week that’s been spent resting as the day after we got back I woke up with a cold (isn’t flying just the best haha!).
This is actually the first time I’ve been sick with a virus and not felt any panic or concern. Each time I’ve fallen ill previously I’ve been concerned about falling backwards in my progress.
I’m In A Good Place
I feel like I am much stronger mentally right now and the fear of falling back to a life of severe chronic illness isn’t there. I know my immune system is kicking into action and that I will get over this cold and back on track again soon.
In terms of where I feel my progress is at, it honestly feels like someone has rewound the clock and I’m back at the point I was at before I got very sick.
The part where I had some niggling symptoms now and again but where I also had days that I felt fine. In other words, I was functioning well but wasn’t quite 100% healthy.
Except now I feel like I am on the up and my body is much more resilient. And, I’ve now let go of the fear of crashing again.
I feel beyond grateful for the progress I have seen, and I hold onto the hope that things will get even better for me.
I do feel I still have some areas to work on—my hormones and continuing to work on healing my gut being the main two. I hope that working on these will help me to progress even further and lead to me seeing stable good health without the dips in between.
- Do I wish I had stem cell therapy sooner?
- Why I’m feeling disconnected from my Fibromyalgia diagnosis
- My follow-up appointment at Infusio, Frankfurt: ACT treatment
Read all of my Infusio blog posts here.
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