Western medicine #fail and the 24/7 out of body experience


Surprise! Another relapse! Third one within 18 weeks, seems like my MS is as competitive as I am. But: I won’t give up and I always win!

I must admit,it was quite disappointing as I started to improve and had some good days the past 3 weeks.
2 weeks ago my eyes started to hurt and were very sensitive to light – turning me into a diva as I now wear sunglasses all day long, even inside the house.
The eye pain seems to be a warning as other MS patients have told me…as soon as it improved, my face and lips went numb last Thursday. By Friday afternoon the numbness took over my entire body again and my right hand is just as bad as on day one.

I call it the ” out of body experience” without having a near death experience.

I walk, I move, do things with my hands – but I am not really in my body as I don’t feel it. Well, it’s hard to describe… I hate the feeling as it spoils everything. I always used to love a hot bath – now I hate it. With MS you are anyway not supposed to take hot baths ( and I don’t anymore, it’s lukewarm = no fun ) but if you can’t feel the temperature at all it gets kind of creepy.
It could be boiling hot or ice cold, I won’t really notice a difference at times. All I feel is the water around me, empty water, some weird liquid and nothing nice and relaxing. Sometimes I get scared that I will burn myself under the shower as I got the lovely old-fashioned “hot” and “cold” tabs instead of one you can select the temperature. A must have for the next apartment 🙂

BUT the real issue – I guess Western medicine is kind of finished with me at this stage, next would be escalation drugs and from what I’ve heard, you don’t want to go down that road, but actually there is no choice. Except going for alternative treatment, but where to start?

I called my MS Center at the hospital today as Monday afternoon is “happy relapse day” ( they do the usual quick tests to see if it’s an actual relapse and if so, you can start the solu IVs right away ) – I was mentally prepared but actually knew they won’t see me.
In the Netherlands you are only supposed to get cortisone IVs max twice a year – that means I am done, one in July and one in August. Yay! Too bad it doesn’t work like a sale, do 2 and get a third one for free 🙂
Obviously my horrible Rebif injections don’t help either.
Luckily I don’t have a normal life anymore ( but do hope it’s only temporary) as the MS nurse told me to take it easy, relax, rest until my next neuro appointment in 10 ( !!! ) days. If the symptoms won’t improve, we decide on next steps.

Honestly, if I had to be at work or had kids, I would laugh out loud. 10 days of out of body experience misery including its restrictions, fun times.

I am so bored of resting…any ideas for an arty DIY hobby? Otherwise I might just get a 1.000.000 pieces jigsaw puzzle 🙂

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