Read all of my Infusio posts here.
I had stem cells for Lyme Disease at Infusio, Frankfurt on the 1st of November. I am now just over 16-weeks post-stem cells. The time is just flying by! If you’re interested, you can also read my 4-week, 8-week and 12-week updates.
Below I have written a week-by-week summary of how I found weeks 13-16.
Week 13 post stem cells for Lyme Disease
In all honesty, I found week 13 hard-going. In part, this was because my husband Ross had gone away on a snowboarding trip. I was really supportive of him going and knew it would be great for him. But, his absence made me realise how much I still rely on his help and support.
During this week, I ended up doing too much and crashed a few times. This wasn’t helped by the fact I wasn’t sleeping well (it annoys me that I struggle to sleep when I’m by myself!). I found that over-exerting myself led to me to feeling quite stressed out and anxious too.
This mixture of stress, anxiety and overdoing it resulted in me becoming a bit of a mess. The poor sleep didn’t help either and I saw the brief return of some old symptoms, such as widespread pain and flu-like feelings. Due to feeling pretty lousy, I ended up spending 3 days in my bed.
This messed with my head a bit as I had been doing pretty well and it felt like a big step backwards. I had to remind myself that I was feeling this way because I had done too much. It would pass and I’d get back to where I was.
I actually have a few strategies in my “toolbox” that help to improve my mindset. Dealing with physical symptoms is hard enough on its own, nevermind adding intrusive thoughts to the mix. I’ll maybe talk about this more in a future post if anyone is interested.
Week 14 SUmmary
Even after Ross had returned, it took me a couple of days to get back into a better sleep routine. I was, therefore, still feeling quite fatigued and I found mornings to be especially difficult. I felt heavy and drained in the mornings and it took me some time to get myself up and going.
I also continued to feel anxious this week and I have absolutely no idea why! I had this constant wave of anxiety running through me. I am naturally a bit of a worrier but this was on another level.
I had no idea what was going on. However, I spoke to a couple of stem-cell buddies who had experienced the same thing. So, I think it may have been healing-related. It did settle down and pass.
Speaking of mental health, I managed to upset myself this week by doing something that usually helps me; journaling. I’ve been journaling my progress each day but this week I realised that I was fast approaching the 100-day milestone.
Now, this date isn’t set-in-stone but, after roughly 3-4 months your stem cells adaptation phase finishes and you move into the next stage of healing. At this point, many people feel a lot better. Importantly, though, many others are not feeling better yet.
Despite knowing that latter point (and despite actually seeing some really positive improvements), I fixated on the fact that I wanted to be in the group that feels better by the 100-day mark. Given I was going through a dip and feeling pretty poorly, all I succeeded in doing was making myself upset.
I think the reminder that I am still reliant on others to help and support me that I got last week didn’t help. I am a stubborn person and I’m desperate to regain my independence. I didn’t like being reminded that I wasn’t quite there yet.
After sobbing my eyes out (poor Ross wasn’t long home and I just cried at him uncontrollably haha), I made the mental decision that I need to let go of expectations and stop focussing on anyone else.
The only important person is me and I need to focus inwards on my own recovery.
My own recovery with stem cells will be different to everyone else’s. At the end of the day, how other people are doing is irrelevant in terms of my own progress. In other words, it doesn’t mean anything in relation to my own healing because we are all different. Using other people’s progress as a benchmark for your own is not a healthy approach.
My healing may be going at a different pace to others but, I know I am getting better and improving. It’s been a rocky road for me but each time I experience a dip I come out the other side stronger. I remind myself of this often as it definitely helps.
Thankfully, by the end of the week, I was feeling a positive shift again. I think this was helped by spending time with friends (we had a Super Bowl party) and also getting back into my usual routine.
Week 15 Post Stem Cells For Lyme dISEASE
At the start of week 15, I was doing pretty well. I was still struggling a bit with mornings but once I got up and going I felt fine. I started easing myself back into getting outside and doing gentle walks.
Things were feeling better again and I even managed a 30-minute yoga routine one day (something that would have been impossible for me before stem cells due to exercise intolerance).
Then the roller coaster hit once again! At the weekend, I woke up feeling exhausted, flu-like, with a sore throat and swollen glands. Ross had come home from his trip full of the cold so I assumed that I was coming down with this too.
However, all of a sudden I got the most intense stomach cramps and shortly after that I began throwing up. I went really light-headed and shakey and thought I was even going to faint at once point. It was not pleasant!
Needless to say, the rest of the week was a write-off. I was back in bed again. Mentally though, I coped with this much better. I think it makes it easier when there is an obvious trigger as to why you are suddenly feeling so ill.
Plus, despite feeling so poorly, I had this underlying feeling of calmness, peace and reassurance. It’s so hard to explain in words. It’s as though my inner voice knew that things were going to get better. I just had to be patient and wait it out until I felt that shift.
Week 16 Summary
I continued to rest as much as possible at the beginning of week 16. Although I was no longer being sick and my stomach felt better I was still feeling incredibly fatigued. I also had a few other random symptoms; I felt a bit off-balance and had pins and needles on-and-off in my left leg.
I wasn’t worried, though. That underlying feeling that things were going to get better was still there. And, it was right. By the weekend, I started to feel that positive shift. Again, it’s hard to put into words but you feel your energy coming back and you start to feel lighter.
On the Sunday of this week, I travelled to Frankfurt as I had my follow-up at Infusio. Thankfully, I was feeling much better and I coped with the flight and all the walking through the airports (I honestly must have walked about a mile through Frankfurt airport!!).
I won’t go into detail here as I will write about it in another post but things have picked up again and I had a really good week at Infusio. I surprised myself by just how much walking I managed to do without tiring myself out. And, the treatments I had has given me a nice boost.
How I’m Feeling At The Moment
I’m feeling really happy and positive right now (which amuses me given it was just the other week I felt so down about things– this is why it’s important to remember that things will pass!).
I am hopeful that the follow-up treatments I had at Infusio will help to calm down the roller coaster ride I’ve been on and help things to become a bit more stable.
Going forward, I think my stem cell updates may start to change in format. I don’t intend to journal in the same way as I feel I have been too symptom-focussed at times. It has definitely been interesting to document and it will be great for me to look back on. But, I think I’ve reached a point where I want to focus more on what I’m doing and achieving instead.
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Read all of my Infusio posts here.