Getting up off the floor again

Started 21 January 2025 · 19 replies · 191 hearts · read 2.6k times

OllyReading, UK · 21 January 2025

1.5 years ago

Getting up off the floor again — putting it in its own thread so it does not get lost in the check-in.

The logistics of this are defeating me more than the medicine is.

What I keep tripping on is not the physical bit. It is the not knowing whether what I am experiencing is normal, and having nobody to ask who is not either selling something or frightened for me.

I am aware some of this may be nothing. I would still like to know whether other people have had it, because I have spent a fortnight assuming I am the only one.

I have read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

Sorry for the length. If anyone has been here, I would very much like to hear it.

NikoTbilisi, GE

I asked my nurse the same question and she said something I have repeated ever since: that the aim is to keep you on treatment, not to get you up the schedule.

RenFacilitatorBristol, UK

Two things, both boring. First, none of us can tell you what to take. Second, the conversation you want to have is with your prescriber, and we can help you write it down.

17me too 9

EdwynNewcastle, UK

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

PietPretoria, ZA

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

BrimHalifax, UK

Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.

11me too 4

BertrandToulouse, FR

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.

OttilieCheshire, UK

I would take that to a clinician rather than to us, and I would do it this week. Not because it is definitely serious — because it is the sort of thing that is much easier to rule out than to worry about.

OsmanAnkara, TR

the reply above said something I want to sit with for a second.

Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.

OllyReading, UK

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

NikoTbilisi, GE

#10

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

LucasSão Paulo, BR

#11

I did exactly the same and felt terrible about it. You have not done anything wrong.

EdwynNewcastle, UK

#12

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

PietPretoria, ZA

#13

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

14me too 5

BrimHalifax, UK

#14

Building on what the reply above wrote rather than answering the original question.

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

BertrandToulouse, FR

#15

the reply above — yes, and the bit that took me longest to accept was the next part.

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

OttilieCheshire, UK

#16

What helped was lowering my own expectations of the week rather than trying to hold the week together.

OsmanAnkara, TR

#17

Please do not read the comments under news articles about this. I lost a fortnight to that.

RenFacilitatorBristol, UK

#18

Before anyone offers a remedy: what has been described here is on the list of things that need a clinician today rather than a thread. I am going to be firm about that, kindly.

18me too 8

NikoTbilisi, GE

#19

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?