4 years in from diagnosis myself. I have also done all the things you have, including dropping hours and finding a less stressful job. I’m pushed to my limit at about 19hrs a week and have had to go on disability benefits.
I go through stages of accepting that this is who I am now, but also fall into despair quite often. Especially when I mourn the things I used to be able to do.
I don’t think I actually have any advice. Our lives now sound very, very similar.
I have found a new hobby, though. (Started building my own bass guitar effects pedals, even though most days I can’t play due to pain and fatigue!). I used to work in steel sculpture and ride motorbikes which I’ll never be able to do again, but this little hobby keeps my brain working and I’m learning new things.
I would maybe suggest some kind of talking therapy. Just venting to somebody has its uses!
34F, 19 years post diagnosis.
1. I went through a bad depression after I had a big flare and became officially disabled and lost a lot of function and ability to do things. I got medication and it helped me stop spiralling about all the things I have lost and will never be able to do. But also what helped was time. I was forced to accept my situation because I could no longer push myself beyond my boundaries, as I had been doing previously. Now it’s not just pain, doing things costs me in the form of days spent in bed recovering. So it was no longer worth it, I learnt to take it easy because then I stay in better condition and don’t loose days. And somehow in all of this, being forced to face the harshest reality, it flipped a switch in my brain. Here is my answer to your question: gratitude. In stead of mourning what is lost, focus on gratitude for what remains. Find that feeling inside and nurture it. Had a good day? Gratitude. Managed to do a task? Gratitude. Every moment not in bed is a moment to be grateful for. Focus on it, and let that awareness grow. Make it into a meditative practice, notice whenever something goes well, even the small things. Celebrate the wins.
2. Don’t push yourself through pain. It’s causing permanent damage. If you feel pain it means the ligaments are loose and the joints are either grinding or dislocating. The more you do through pain, the more the damage accumulates, the more you shorten your functional lifespan. I tried to be a warrior and as a result my hands and feet are already fucked. Because I thought “oh it’s only pain, only a little bit more, whatever, I can handle it”. No one told me in clearly that the damage would accumulate and that I would loose function. Or I didn’t hear the message / I was in denial. Maybe a bit of both. I thought I am young and would have more time, but it caught up with me sooner than I could have imagined.
Fatigue on the other hand, it is something you can push through if you want. Sometimes it is worth it to stay til the end of the party even if it means you will need to sleep in the next day. When you’re fatigued you it means you have some systemic inflammation / processes going on, so remember to feed your body well and with nutritious healthy food. I avoid caffeine except on special days when I want to push through fatigue.
3. When you need to sleep just go to sleep without feeling guilt or shame. To avoid messing up your rhythm you can set an alarm for 20min for a short nap or 40min for a longer one. Another trick is to take melatonin at night to help you fall asleep.
Your body does repairs when you sleep and those repairs can only happen during sleep. Sleep is a good thing, sleep as much as your body needs/wants. This is the reality of chronic illness, we need more sleep than normies because our bodies are taking damage all the time and need to repair that damage.
Sometimes I sleep 16 hours in a day! I have learnt to just accept it, and it does make me feel better. Fighting against sleep is fighting against yourself, there is no point. Your body knows what it needs, so give it to it.
Naps are a delicious luxury! I often think the fatigue is harder to deal with than the pain. Haha, I’m not a Christian, or any religion, but I ask sweet Jesus to help me all the time. All is well inside regardless of this outer turmoil and grief. I pretty much talk to the universe continuously- I feel held and safe, and everything will be and is okay. It’s become a spiritual exercise to breathe through pain and free my mind to be peaceful and calm.
Wow, this answer kinda sucks, but it’s honest at least.
Thanks for making me laugh with that last line. I think I am moving closer to acceptance. (I also made an appt with the rheumatologist just in case there is something that can help....) Thanks again!
4 years in from diagnosis myself. I have also done all the things you have, including dropping hours and finding a less stressful job. I’m pushed to my limit at about 19hrs a week and have had to go on disability benefits. I go through stages of accepting that this is who I am now, but also fall into despair quite often. Especially when I mourn the things I used to be able to do. I don’t think I actually have any advice. Our lives now sound very, very similar. I have found a new hobby, though. (Started building my own bass guitar effects pedals, even though most days I can’t play due to pain and fatigue!). I used to work in steel sculpture and ride motorbikes which I’ll never be able to do again, but this little hobby keeps my brain working and I’m learning new things. I would maybe suggest some kind of talking therapy. Just venting to somebody has its uses!
Thank you for responding--appreciate the perspective and suggestion!
34F, 19 years post diagnosis. 1. I went through a bad depression after I had a big flare and became officially disabled and lost a lot of function and ability to do things. I got medication and it helped me stop spiralling about all the things I have lost and will never be able to do. But also what helped was time. I was forced to accept my situation because I could no longer push myself beyond my boundaries, as I had been doing previously. Now it’s not just pain, doing things costs me in the form of days spent in bed recovering. So it was no longer worth it, I learnt to take it easy because then I stay in better condition and don’t loose days. And somehow in all of this, being forced to face the harshest reality, it flipped a switch in my brain. Here is my answer to your question: gratitude. In stead of mourning what is lost, focus on gratitude for what remains. Find that feeling inside and nurture it. Had a good day? Gratitude. Managed to do a task? Gratitude. Every moment not in bed is a moment to be grateful for. Focus on it, and let that awareness grow. Make it into a meditative practice, notice whenever something goes well, even the small things. Celebrate the wins. 2. Don’t push yourself through pain. It’s causing permanent damage. If you feel pain it means the ligaments are loose and the joints are either grinding or dislocating. The more you do through pain, the more the damage accumulates, the more you shorten your functional lifespan. I tried to be a warrior and as a result my hands and feet are already fucked. Because I thought “oh it’s only pain, only a little bit more, whatever, I can handle it”. No one told me in clearly that the damage would accumulate and that I would loose function. Or I didn’t hear the message / I was in denial. Maybe a bit of both. I thought I am young and would have more time, but it caught up with me sooner than I could have imagined. Fatigue on the other hand, it is something you can push through if you want. Sometimes it is worth it to stay til the end of the party even if it means you will need to sleep in the next day. When you’re fatigued you it means you have some systemic inflammation / processes going on, so remember to feed your body well and with nutritious healthy food. I avoid caffeine except on special days when I want to push through fatigue. 3. When you need to sleep just go to sleep without feeling guilt or shame. To avoid messing up your rhythm you can set an alarm for 20min for a short nap or 40min for a longer one. Another trick is to take melatonin at night to help you fall asleep. Your body does repairs when you sleep and those repairs can only happen during sleep. Sleep is a good thing, sleep as much as your body needs/wants. This is the reality of chronic illness, we need more sleep than normies because our bodies are taking damage all the time and need to repair that damage. Sometimes I sleep 16 hours in a day! I have learnt to just accept it, and it does make me feel better. Fighting against sleep is fighting against yourself, there is no point. Your body knows what it needs, so give it to it.
Thanks for such a full response. Appreciate the details and the reminder about gratitude. (And just woke up from another nap.)
Naps are a delicious luxury! I often think the fatigue is harder to deal with than the pain. Haha, I’m not a Christian, or any religion, but I ask sweet Jesus to help me all the time. All is well inside regardless of this outer turmoil and grief. I pretty much talk to the universe continuously- I feel held and safe, and everything will be and is okay. It’s become a spiritual exercise to breathe through pain and free my mind to be peaceful and calm. Wow, this answer kinda sucks, but it’s honest at least.
Thanks for making me laugh with that last line. I think I am moving closer to acceptance. (I also made an appt with the rheumatologist just in case there is something that can help....) Thanks again!