#rheumatoidrevolution — Public Fediverse posts

Today is my first day on methotrexate - one of the long-term drugs I've been given for my "strongly positive" rheumatoid arthritis. To be honest, I was pretty terrified of taking it. I realised it's obviously a bit of a heavy duty drug: weekly dose, titrated, and closely monitored.

I've written previously on how I feel about medication but I know that for now at least I'm going to have to submit to it. So I avoided looking into it too deeply. In fact - and I know some people will frown at this (or worse) - I got ChatGPT to give me just the headlines: what to expect in terms of how it might make me feel; what side effects to look out for; what to be concerned about if it showed up. And frown (or worse) all you like - for me, it was the best way to go about it. I knew that if I read the full information leaflet, I'd end up freaking out and not taking it. And I kind of knew I had to.

Well, I took my first dose last night. I've got to tell you, even the packaging looks ominous. I've never seen a black blister pack before. What's that all about? But I took the four tiny tablets and went to bed.

1/2

#RheumatoidArthritis #ChronicIllness #AutoimmuneDisease
#LivingWithRA #SpoonieLife
#BodyListening #HealingInProgress #SupportingMyBody
#RheumatoidRevolution
#ChronicIllnessWarrior #SelfCare #medication

Today is my first day on methotrexate - one of the long-term drugs I've been given for my "strongly positive" rheumatoid arthritis. To be honest, I was pretty terrified of taking it. I realised it's obviously a bit of a heavy duty drug: weekly dose, titrated, and closely monitored.

I've written previously on how I feel about medication but I know that for now at least I'm going to have to submit to it. So I avoided looking into it too deeply. In fact - and I know some people will frown at this (or worse) - I got ChatGPT to give me just the headlines: what to expect in terms of how it might make me feel; what side effects to look out for; what to be concerned about if it showed up. And frown (or worse) all you like - for me, it was the best way to go about it. I knew that if I read the full information leaflet, I'd end up freaking out and not taking it. And I kind of knew I had to.

Well, I took my first dose last night. I've got to tell you, even the packaging looks ominous. I've never seen a black blister pack before. What's that all about? But I took the four tiny tablets and went to bed.

1/2

#RheumatoidArthritis #ChronicIllness #AutoimmuneDisease
#LivingWithRA #SpoonieLife
#BodyListening #HealingInProgress #SupportingMyBody
#RheumatoidRevolution
#ChronicIllnessWarrior #SelfCare #medication

Fuck, was I frustrated earlier! And now I've come down from that spike, I just... don't know quite what to do with my day.

Yesterday, I strimmed a tiny area of grass and weeds outside my back door. Today, I'm paying for it with increased pain and limited mobility. I thought the frustration was less about the limits on my capacity (background noise), and more about the lack of help and support from friends and neighbours.

No, it's not a rant: I know that people have good intentions, but also their own lives, their own chores. But that doesn't stop the feelings of disappointment, isolation, and frustration. I mean, take yesterday's task. OK, it wasn't life or death stuff, and I had actually asked a friend to strim my plot for me, and she'd said yes. So why did I attempt it? Several reasons.

First of all, not life or death, but weighing on my mind enough to make it difficult to relax and do other, more manageable things (the area that I tackled being constantly visible from inside my home). And I'm grateful my friend said she'd do it, but I can't start demanding it be done now, ASAP, today... yet that's what I needed. So I did it myself, and paid the price.

When I sat down with that frustration/understanding about my friends and neighbours, I realised that the frustration at my own lack of capacity was louder than I'd realised, too. But extending that same level of understanding to myself is harder, somehow. Actually, not "somehow": it's really only in recent years that I've learned to have any kind of compassion for myself. And what a game changer that is!

So I guess I'll have to learn to hold that frustration/understanding axis about my own physical capacity, too.

Great, more 'work'!

#RheumatoidArthritis #ChronicIllness #AutoimmuneDisease
#LivingWithRA #SpoonieLife #HealingInProgress #SupportingMyBody
#RheumatoidRevolution
#ChronicIllnessWarrior #SelfCare #mentalhealth

It’s taken me two days to sit down and write since the hospital visit. Not because the appointment itself was so awful (though I did just collapse into bed the moment I got home), but because that’s how long it’s taken me to get my head around it.

Sorry — BEGIN to get my head around it.

Because, you see, I mentioned previously that I was both relieved and upset about the upcoming appointment… Well, my upset was to do with a core distrust of big pharma and the medical system, and I had worked really hard to stay outside of it.

Now, don’t get me wrong: there are wonderful things about modern medicine. I mean, if I got in a serious car crash, for example, I want an ambulance, not a homeopath, thank you! But I’ve also seen people, especially those with chronic illness, get really fucked over by the medical system. I don’t want to over-egg it; I know there are plenty of positive cases too, but I certainly didn’t want to be part of it. But then I also didn’t want a chronic illness!

Nonetheless, I’ve had to find some acceptance around meds, at least for now, because I simply couldn’t function in the state I’ve been in for several months. I have to hang on to the belief — the light at the end of the tunnel — that the body is an amazing organism and that it is possible to heal. Not in a magical sense, but by working with my body and giving it every support possible to do its thing.

And for now, that support seems to include medication to get this disease under control.

So be it.

#RheumatoidArthritis #ChronicIllness #AutoimmuneDisease
#LivingWithRA #SpoonieLife
#BodyListening #HealingInProgress #SupportingMyBody
#IntegrativeHealth #rheumatoidrevolution

It’s taken me two days to sit down and write since the hospital visit. Not because the appointment itself was so awful (though I did just collapse into bed the moment I got home), but because that’s how long it’s taken me to get my head around it.

Sorry — BEGIN to get my head around it.

Because, you see, I mentioned previously that I was both relieved and upset about the upcoming appointment… Well, my upset was to do with a core distrust of big pharma and the medical system, and I had worked really hard to stay outside of it.

Now, don’t get me wrong: there are wonderful things about modern medicine. I mean, if I got in a serious car crash, for example, I want an ambulance, not a homeopath, thank you! But I’ve also seen people, especially those with chronic illness, get really fucked over by the medical system. I don’t want to over-egg it; I know there are plenty of positive cases too, but I certainly didn’t want to be part of it. But then I also didn’t want a chronic illness!

Nonetheless, I’ve had to find some acceptance around meds, at least for now, because I simply couldn’t function in the state I’ve been in for several months. I have to hang on to the belief — the light at the end of the tunnel — that the body is an amazing organism and that it is possible to heal. Not in a magical sense, but by working with my body and giving it every support possible to do its thing.

And for now, that support seems to include medication to get this disease under control.

So be it.

#RheumatoidArthritis #ChronicIllness #AutoimmuneDisease
#LivingWithRA #SpoonieLife
#BodyListening #HealingInProgress #SupportingMyBody
#IntegrativeHealth #rheumatoidrevolution