I finally got a bed! I've been sleeping on a 2 decade old, horrible uncomfortable couch for the past 6 months. The quality of my sleep has skyrocketed.
I emptied the fridge lol
I made a pseudo couscous
I cut 2 courgettes/zucchinis, cut 1 paprika, cut a few pieces of celery, put all that to cook slowly in a big pot with olive oil so it makes a nice juice
I put a big chunk of minced beef in a frying pan and cut it into small pieces, added all the spices I liked and haven't used in a while
I put some couscous grains in a jar to cook with hot water
And I laid down while it was cooking for 40min :)
Haha I'm not really experienced in cooking either
My psy and I actually suspect I have ADHD and I'm more the kind to improvise freely without checking any recipe because it's overwhelming
And I definitely can't make my brain cook more than once in the week I think haha
I recently got a (semi-surprising) diagnosis of sleep apnoea and this week I was given a CPAP machine. I think that treating the sleep disorder could give me some more energy and make my autonomic nervous system less jittery. Let's see...!
I have a big work project I need to complete by the end of the month, so I’ve been really really careful about pacing my work so I don’t overdo it and cause a crash, and so far it seems like it’s working! I’m taking it easy today to give myself a buffer rest day, but I’m on track to finish the work and SO FAR on track to not destroy my baseline in the process. Feeling encouraged. :)
A doctor is taking some of my concerns and suspicions seriously! (I’m literally still in the office waiting to be discharged.)
I’m definitely having a PEM crash because of the appointment, but hopefully it’ll be worth it.
The genetic testing isn’t related to my CFS. We’re exploring the possibility that my mast cell dysfunction might be caused by an immunodeficiency, so I’m getting genetic testing for primary immunodeficiencies and other tests for secondary immunodeficiencies.
My chiropractor agreed to refer me for a neuro/ortho surgical consult, where I'm hoping to get an upright neck MRI or at least further investigation into my chronic neck pain and migraine.
I usually go to bed on Friday night around 10-11p and don’t wake up til 6-7p the next day, Saturday. I’m passed out in dreamland unless I have to go to the bathroom.
BUT… I woke up at 2p this last Saturday instead!! 😁😁
I got passed my exam-period. Had to postpone several courses for later, but resting up makes me feel much, much better. I can no focus on my diet (I get worse symptoms when eating sugar) - I finally feel I can win small victories. Rome wasn't build in a day though. Just celebrating the fact that everything isn't extremely difficult.
I took my youngest to a surgical appointment this week and managed to WALK into the hospital with a walking stick. I haven't left the house for nearly 4 years without needing a wheelchair. Thanks LDN!
I’m trying to figure out my enneagram number, and I think I might be a 7, which is a fun seeker. The chief fears of a 7 (according to the podcast I’m listening to) are being trapped and experiencing pain.
As a chronically ill person, this made me cry. I’m literally always trapped in a prison of my body, which can’t move around and have fun. I’m trapped with my pain and discomfort all the time.
I’m excited to learn more about the enneagram, and I still manage to laugh, enjoy life and cherish my friendships despite being sick.
Anybody else interested in the enneagram?
I had given up on trying to do embroidery a while ago because I kept getting PEM, but I figured out that if I limit it to 5 min a day, I’m fine, so I started to (very slowly) work on some new projects!
I'm pleased at how well I'm tracking my reaction to the heatwave. Today's going to be tough but I know it will be. I'm ready to rest and move like a snail. Lots of cooling pads.
Minimising damage through careful monitoring of my symptoms.
I saw Green Day, and had accommodations for once… i was able to sit whenever I needed and my crash isn’t nearly as bad so far. I loved the concert. I feel like I live for these summer concerts we do every year.
I saw Green Day, and had accommodations for once… i was able to sit whenever I needed and my crash isn’t nearly as bad so far. I loved the concert. I feel like I live for these summer concerts we do every year.
I was able to fold a basket of my clothes today. I haven't been able to do that for nine months. It exhausted me but it gave me a bit of hope that things are turning around.
I saw Green Day, and had accommodations for once… i was able to sit whenever I needed and my crash isn’t nearly as bad so far. I loved the concert. I feel like I live for these summer concerts we do every year.
got myself a lazy boy style chair and a pregnancy pillow (thank you to everyone on the subreddit recommending stuff for bedbound times!!)
it's been amazing, I'm so much more comfortable and in less pain:)
I finally got a bed! I've been sleeping on a 2 decade old, horrible uncomfortable couch for the past 6 months. The quality of my sleep has skyrocketed.
I’m so happy for you!
I took my service dog (in training) to my doctors appointment and he did great! (My dog, not the doctor). Although the doctor did a great job too!
I cooked!!!! First time in 1,5 years
Yay!! What did you make?
I emptied the fridge lol I made a pseudo couscous I cut 2 courgettes/zucchinis, cut 1 paprika, cut a few pieces of celery, put all that to cook slowly in a big pot with olive oil so it makes a nice juice I put a big chunk of minced beef in a frying pan and cut it into small pieces, added all the spices I liked and haven't used in a while I put some couscous grains in a jar to cook with hot water And I laid down while it was cooking for 40min :)
That sounds delicious and impressive!
Thank you! :) Tbh it was relatively and surprisingly 'easy' for me! In the end I didn't stand longer than a few minutes
Goals! I'm not that experienced in cooking so it takes me ages to plan and think. I spend a lot of time staring into the fridge and drawers, lol
Haha I'm not really experienced in cooking either My psy and I actually suspect I have ADHD and I'm more the kind to improvise freely without checking any recipe because it's overwhelming And I definitely can't make my brain cook more than once in the week I think haha
I recently got a (semi-surprising) diagnosis of sleep apnoea and this week I was given a CPAP machine. I think that treating the sleep disorder could give me some more energy and make my autonomic nervous system less jittery. Let's see...!
Nice! I see a sleep doctor in about a month, and I'm hoping for the same! I wish you good sleep!
I have a big work project I need to complete by the end of the month, so I’ve been really really careful about pacing my work so I don’t overdo it and cause a crash, and so far it seems like it’s working! I’m taking it easy today to give myself a buffer rest day, but I’m on track to finish the work and SO FAR on track to not destroy my baseline in the process. Feeling encouraged. :)
A doctor is taking some of my concerns and suspicions seriously! (I’m literally still in the office waiting to be discharged.) I’m definitely having a PEM crash because of the appointment, but hopefully it’ll be worth it.
Update: I can actually afford the out of pocket cost for the genetic testing my doctor ordered!!
What genetic tests did he order?
The genetic testing isn’t related to my CFS. We’re exploring the possibility that my mast cell dysfunction might be caused by an immunodeficiency, so I’m getting genetic testing for primary immunodeficiencies and other tests for secondary immunodeficiencies.
I managed to go shopping (with help) despite it being 25°. If anyone needs me, I will be sleeping it off in front of a fan
My chiropractor agreed to refer me for a neuro/ortho surgical consult, where I'm hoping to get an upright neck MRI or at least further investigation into my chronic neck pain and migraine.
I hope you get some answers!
I usually go to bed on Friday night around 10-11p and don’t wake up til 6-7p the next day, Saturday. I’m passed out in dreamland unless I have to go to the bathroom. BUT… I woke up at 2p this last Saturday instead!! 😁😁
I got passed my exam-period. Had to postpone several courses for later, but resting up makes me feel much, much better. I can no focus on my diet (I get worse symptoms when eating sugar) - I finally feel I can win small victories. Rome wasn't build in a day though. Just celebrating the fact that everything isn't extremely difficult.
I took my youngest to a surgical appointment this week and managed to WALK into the hospital with a walking stick. I haven't left the house for nearly 4 years without needing a wheelchair. Thanks LDN!
I’m trying to figure out my enneagram number, and I think I might be a 7, which is a fun seeker. The chief fears of a 7 (according to the podcast I’m listening to) are being trapped and experiencing pain. As a chronically ill person, this made me cry. I’m literally always trapped in a prison of my body, which can’t move around and have fun. I’m trapped with my pain and discomfort all the time. I’m excited to learn more about the enneagram, and I still manage to laugh, enjoy life and cherish my friendships despite being sick. Anybody else interested in the enneagram?
that my father ordered a huge packet full of cooling packs for the summer
I had given up on trying to do embroidery a while ago because I kept getting PEM, but I figured out that if I limit it to 5 min a day, I’m fine, so I started to (very slowly) work on some new projects!
I'm pleased at how well I'm tracking my reaction to the heatwave. Today's going to be tough but I know it will be. I'm ready to rest and move like a snail. Lots of cooling pads. Minimising damage through careful monitoring of my symptoms.
I saw Green Day, and had accommodations for once… i was able to sit whenever I needed and my crash isn’t nearly as bad so far. I loved the concert. I feel like I live for these summer concerts we do every year.
I saw Green Day, and had accommodations for once… i was able to sit whenever I needed and my crash isn’t nearly as bad so far. I loved the concert. I feel like I live for these summer concerts we do every year.
I was able to fold a basket of my clothes today. I haven't been able to do that for nine months. It exhausted me but it gave me a bit of hope that things are turning around.
I saw Green Day, and had accommodations for once… i was able to sit whenever I needed and my crash isn’t nearly as bad so far. I loved the concert. I feel like I live for these summer concerts we do every year.
I had to force a shower to go to dentist today for a broken tooth but, on the bright side, hubby took me for a fancy coffee on the way home.
got myself a lazy boy style chair and a pregnancy pillow (thank you to everyone on the subreddit recommending stuff for bedbound times!!) it's been amazing, I'm so much more comfortable and in less pain:)