I’m 28 female living in the UK. I’m really struggling at the moment with my pain and my mental health. I tired of being in pain. I’m tired of pacing and not even being able to wash pots without a flare. I’ve been diagnosed since I was 18. My flares started in my feet then spread to hands and now it’s in my face and what feels like inside my head.
I work full time currently but after this weeks looks like I need to face the fact that I can’t keep doing full time hours. I love my job and I just feel so rubbish. I didn’t know where else to turn so here I am writing this to you all.
I’m so sorry to hear of your anguish. I was just telling my husband how horrible this disease is. I told him if we could figure out how to replicate it, it would be a perfect form of torture in warfare. I had to let go of a 20 year career and take disability. It was a horrible ending, as I had a nervous breakdown after my husbands death, right after the loss of my mother. That and all of my ailments led me to disability. 7 years later, I’m pretty much at peace with it all. I’m so sorry for your pain and understand. Doesn’t make it better, but you aren’t alone.
I am so sorry for all pain and anguish but this site makes you in a better space after reading other peoples problems because they are usually worse than yours. Your Winter is coming so hopefully the flaes will subside.
Keep your chin up and maybe look at your meds to see if they can be changed sometimes a change helps.
Try to have a reasonable Christmas and a Happy New Year and that goes to everybody.
I know that everyone is different but I recently switched to a plant based diet six weeks ago. Basically plants and whole grains. No animal products and no processed vegan substitutes. It was difficult at first but fine now. No flares at all. It is typically not really bad for me this time of year but normally I would have a flare at least once every two weeks for 3-5 days. It was really bad this summer and fall which lead me to try the diet switch. Worth a try.
I‘m so, so sorry you’re dealing with this. Your decline sounds a lot like mine. I also loved my job (teaching) but finally had to give it up. Only, I was a lot older than you are now, so I can just imagine the emotional mental and physical challenge from so much loss so young.
It may not seem like much, but one thing that helped me with the depression was talking to friends of mine who had been disabled all their lives. They told me that everyone gets “disability depression”. One woman also said that the depression is often more disabling than the disability. It was heartening to know that it wasn’t about me, but my situation. And that I shared that sense of hopelessness and uselessness with people who had been living with disability for ages
I think everyone struggles with this at some points on their journey. This site really helps a lot, and if you can’t work and get on disability it helps to have a hobby you can do. For me it’s video games!
It’s difficult having it so young, I’m 20 and have had symptoms since the age of 14, and now have a whole list of conditions I gotta deal with and it’s tough. Chronic pain is the worst too, but as much as I hate it exercising helps. I suggest doing swimming! It’s the one exercise I can do without flaring and it’s a great workout for your body. Feeling better mentally and physically from exercise seems to help a ton when dealing with depression.
It’s okay to take a mental health day, do something that makes you happy and gives you that boost you need!
I’m sorry. It is a lot to deal with. I had one hospital admission due to physical symptoms (6 days no sleep, tachycardia()and depressive episode. I was lucky to have good docs while i was there. They recommended an outpatient program for afterward, but I couldn’t do the outpatient program because I couldn’t handle the temperature and mask. So it’s hard to juggle mental health and EM.
I have been meditating since then, I think ti is helpful. Focus on breath, etc. But also I try to think of things to breathe in (peace for my mom’s neurological disease) and what to breathe out (her pain that she can’t explain in words to people). Just as an example.
I’m trying to see a psychologist again - it does make a difference. I think the evidence is that it is the relationsihp wtih the psychologist and patient that matters the most, more than the tyhpe of therapy.
I had such peace mentally during a ketamime iv - i had such a sense of forgiveness for myself and for my family and like I could feel their pain and how profound it was and I felt closer to others, more of an inner peace. All ruminations gone and I just cried and cried because I felt I could breathe again. I can’t tolerate ketamine but it was a life changing experience. I think it might be possible to get to that place with mediation and buddhist reading (it would take a huge consistent effort though…), i don’t know. Anitdepressants sort of numb you (not whjat ketamine did to me) while psychologists sometimes become someone to “complain to” and not move fowrard.
friends dont necessarilyh make me feel better. I feel like the right answer is to reach to others but often I feel worse and misunderstood. Maybe i need more self-acceptance and ore self compassion to feel b etter connectied to friends.
