Read all of my Infusio posts here.
Wednesday 24th January 2018
I am now 12 weeks post stem cell therapy for Lyme Disease. I had my stem cell procedure (SVF) at Infusio, Frankfurt on the 1st of November, 2017. You can read my 4-week update here and you’ll find my 8-week update here.
Below I have written a week-by-week summary of how I found weeks 9-12.
Week 9 Update
In week 9, I continued to sleep really well. I was falling asleep quickly and getting deep sleep with very vivid dreams. Some of these dreams were intense and I always remembered them on waking. I only had one night of disruptive sleep and that was due to hot flushes (which I think were probably hormone-related).
I had two days of being social in week 9. The first was a games night with friends where we played some board games. I was able to sit up at the table and socialise for a few hours without it draining me. This is a huge achievement as I used to find sitting up exhausting before stem cell therapy.
Talking about sitting up, I am no longer playing PC games in bed either. I had a bit of a ridiculous set up where my PC was beside my bed hooked up a TV on the wall. I’d lie in bed with my mouse beside me and keyboard on my lap.
This enabled me to play online games, such as Overwatch, with my friends without feeling ill from sitting up. I’m now sitting up and gaming at a desk, which is a massive achievement for me.
Ross and I also spent New Year’s day at my parents’ house where we had dinner then played some card games. Again, I managed this absolutely fine.
Although I had the above wins, I was feeling physically and mentally fatigued this week. I think the socialising, gaming and eating too much food (I ate far too much over the Christmas and New Year period) contributed to this. I also had a couple of late nights, which won’t have helped.
Although it sucked to be so tired (and I even felt flu-like on a couple of days this week), I was okay with it because I earned it from doing all that I mentioned above.
I have to say though, that the fatigue has changed in nature. For the most part, it feels like utter exhaustion and the need to sleep. Before going to Infusio, my fatigue was horrible, draining and made me feel ill and flu-like. The two days where I did feel flu-like paled in comparison to how I used to feel.
So, although I am still fatigued, it feels nowhere as bad as it used to.
My pain has been very low this week. For the most part, I have only had pain in my lower back. I’m pretty sure I need to go and see someone about sorting out my back. I think it’s injury-related rather than being caused by Lyme or Fibromyalgia. I’ve had problems with my back since I was a teenager and it’s been flaring on and off ever since.
One thing that definitely helps with my back pain is my Oska Pulse. I am only using it when I feel it’s absolutely necessary though, as this is what I was told by Infusio. They say less is more during the 100-days following stem cells. After this period, I can go back to using my Oska Pulse regularly.
I mentioned in my 8-week update that I had started to experience acid reflux at night; a symptom that was completely new to me. This seemed to settle down by the end of week 9. I took a break from drinking tea for a few days and this seemed to help (in addition the strategies I mentioned in my previous update post).
Going forward, I’m being very mindful of how much tea I drink and I am continuing with my low-histamine diet to try and prevent this issue from re-appearing. So far, *touch wood* it hasn’t.
My mood has been a bit up and down this week. Some days I’ve been quite grumpy and irritable. Although this could be due to fluctuating hormones (which can happen during this stage of healing), I think it might be stress related, which I’ll talk about next.
Week 10 Update
Following New Year, things got back into a better routine for me. Unfortunately, though, I had a big external stressor that had a negative impact on my health in week 10. My dog Oscar had an operation to remove a cataract.
He was in the vets for 24 hours and, though we had prepared ourselves for his operation, it was horrible not having him at home. As much as I tried to stay relaxed about it, it did stress me out thinking about how he was doing the day of his surgery.
Feeling The Effects of Stress
I still don’t have much of a tolerance for stress and I found my brain fog, muscle pain and fatigue increased as a result of it. I also had quite a few headaches this week, which I put down to stress too. Not to mention a couple of nights of poor sleep.
Thankfully, all went well with Oscar’s op and his recovery has been going well too. However, having to be vigilant and watch him all the time during the initial few days after his surgery was exhausting for me!
Poor Short-term Memory
My short-term memory was completely shot in week 10. Stress probably played a big role in this too. But, I literally kept forgetting what I was about to do or why I was going into a room, etc. I also completely forgot how to spell certain words.
I wrote “anti” on a card and stared at it for a couple of minutes, knowing it was wrong but not knowing what the correct spelling was. I had to ask my mum as I literally could not think of it. The word I was looking for was, of course, auntie. It was funny moment and gave us a good laugh, but I did feel like a bit of an idiot!
Getting Back into Walking
By the end of week 9, I felt ready to start getting back into doing a little bit of exercise. I had been going out for daily walks following my stem cell treatment, but a nasty cold landed me in bed for most of last month.
My energy was still low but I was encouraged by Infusio to do some gentle walking if I could. I started by doing short 5-minute walks. Just up the street and back again. It felt nice to be out but I found it a bit challenging.
I didn’t have the same level of stamina I seemed to have around weeks 2-3 post-stem cells. I felt exhausted after my walks. It made me feel a little despondent if I’m totally honest.
I was worried that I wouldn’t get back to where I was before I got sick with the cold. But, those around me reminded me that I needed to rebuild my strength and I’d get back to where I was if I was careful and took things slowly.
Having a good support network following treatment is definitely a must in my experience!
Week 11 Update
This week I really struggled with mornings. Some were worse than others but, in general, I’d wake up feeling heavy with a ‘hungover’ feeling. This was despite sleeping well. I obviously can’t say for sure, but I think the difficult mornings may have been due to the increased activity levels.
In general, though, my energy felt that bit better this week. Rather than being low for the entire day, it seemed to come in waves and dips. First thing in the morning was always when it was at its lowest.
I’ve had to take mornings slow and allow myself the time I needed to wake up and be ready for the day. Once I got up and had breakfast, though, I felt better.
I still didn’t feel great in myself but I’d have more energy mid-morning to early afternoon, then experience a dip late-afternoon where I’d have to completely rest. This helped to recoup some energy for the evenings.
I’m not sure if these energy dips and waves are a part of healing or if my adrenal glands are perhaps struggling a bit. I will be having hormone testing– including cortisol– soon to check. I do feel that things are headed in a better direction than the last few weeks, though.
I especially noticed a shift in my mental energy this week. I’ve had a clearer mind and I’ve been able to concentrate for longer periods. I’ve done some blogging and spent a few hours playing computer games (and sitting up whilst doing so).
My short-term memory still feels pretty rubbish though!
I also want to mention that–in addition to the fatigue– I had some episodes of muscle weakness at the very beginning of week 11. I found my muscles were fatiguing really quickly and tasks that I had been finding easier were a bit of a challenge again.
There were times when my legs just felt like jelly. Other times, for example, when I was walking up the stairs in my home, I’d feel the lactic acid building up in my muscles (which hadn’t happened for a while).
I also had some tingling and weakness in my arms. They felt like they were coming back from being asleep; you know that feeling when you’ve accidentally fallen asleep on your arm and then move off of it? It was just like that but a bit less severe.
Building UP My Walking
Thankfully, this seemed to ease off by the middle of the week and I started to get some strength back. I have no idea what this was all about. It could just be because I was doing more, I don’t know. But, it got better so I didn’t stress about it.
I continued with my walking this week despite the difficult mornings, jelly legs and dips in energy. This would have set off alarm bells for me before (aka you are headed for a crash), but I listened to my gut feeling and it felt like the right thing to do.
I figured that, even though I didn’t feel too good, each day I was able to repeat the same level of activity as the day before without crashing. And, I recovered by resting after activity. Before stem cells, I would not have recovered and I would have crashed for at least a couple of days (and even longer earlier in my illness).
So, I continued to go out for short walks each day. I do think my body responded well to the exercise as I was finding things easier by the end of the week.
As I mentioned, the muscle weakness had subsided and I started to be able to walk a little further. I was managing 10-15 minute walks by this point. My stamina still didn’t feel as good as it previously had. But, I kept telling myself that I would get there.
At times, I think I need to remind myself that my body is doing incredible things. I might not know or feel exactly what is going on. But, my body is busy healing and that is an energy-demanding process. There will be days where I don’t feel as good because of that. And, that’s okay.
I have had some lower back pain and generalised muscle pain this week. However, the latter has been short-lived and feels different. I genuinely think it is a ‘normal’ pain. By that, I mean that my muscles are sore from being used more. They aren’t used to it yet and I’m building up the strength in my muscles with the walking I’m doing.
Towards the end of week 11, my mood was really good. I think it’s helped that I’ve been able to do more. I’m getting intense feelings of joy and motivation for life. Similar to how I felt initially after stem cells. So, that is making me think positively about my healing.
Week 12 Update
Week 12 has been a little mixed. I’ve had some really good days and some days where I’ve felt a little run down. Let’s start with the good days…
Increasing the Duration of my Walks
For the first half of the week, I was doing 20 minute walks each day. Not only that, but they were starting to feel easier too. I wasn’t nearly as exhausted when I finished walking. I’d still come home and rest afterwards, but my recovery was quicker. I think I am making some good ground with building up my stamina.
I even had one day where I spent the entire day out of bed. The. Entire. Day! That’s huge! I still rested, of course, but this involved having a sit on the sofa rather than laying flat out in bed. Hopefully, this is just a little glimmer of things to come.
My head has been really clear this week too. I’ve been able to concentrate for longer periods of time. I’ve done quite a bit of gaming and blogging. One day, I even sat up and blogged at my desk. This is the first time I’ve actually done this (rather than lying in bed with my laptop). At the moment, I can’t do this consistently but hopefully one day I will be able to.
Feeling a Little Run DOwn
For the latter part of the week, I’ve been feeling a bit run-down. Winter truly sucks and lots of people seem to have a cold again. I think my body might be putting its energy into fighting off these bugs. Rather than fight how I’m feeling (to continue with the progress I’ve made), I’ve surrendered to it.
I’ve spent 3 days resting in bed, allowing my body time to recuperate. Today, though, I felt well enough to go out for a walk. And, I managed it fine. I think I’ll need to take it a bit easier for a few days until I am feeling better in myself.
Hopefully, though, I won’t succumb to another cold and I’ll get back to how I was feeling at the start of week 12.
Sleep Continues To Be Good
Despite the ups and downs this past week, my sleep has continued to be good. I think the fact I am sleeping well is doing wonders for my healing. I am not having as many vivid (and sometimes scary dreams) that I was having. I am still dreaming, though.
Mornings can still be a challenge for me and I am continuing to allow myself the time I need to wake up and be ready for the day. Hopefully, over the next few weeks, mornings might start to become a little easier.
Happy With My Progress
I almost can’t believe it’s been 12 weeks since I received my stem cells. Overall, I am happy with how I am progressing and I am definitely glad that I had stem cell therapy for Lyme Disease at Infusio. It’s been one of the best decisions I’ve made for my health.
I will be returning to Frankfurt for my follow-up appointment next month. I’m excited about the treatments I’ll receive when I am there (I’ll share more on this in a future post). And, it will be nice to get some tests done to see how my body is healing and responding to the treatment I’ve had so far.
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Read all of my Infusio posts here.