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Posted

Hi all! I'm still undiagnosed and have not felt well in a long time. Unable to work and I'm holding on to school by a thread. I'm undiagnosed with alot of symtoms, shame to say there are basically no doctors at all in Sweden who work with this. None that I have managed to get to anyhow. My quality of life has gone down alot as I'm sure you guys can understand, since I stopped working it's the excruciating fatigue + tachycardia that's the most debilitating. Lately I've started to feel more depressed and thoughts tend to be more negative, doctors not taking me seriously does not help with the matter. I'm the sole caregiver of my daughter and live with her alone so I'm by myself alot of the time with my thoughts and find myself too tired to go anywhere. Maybe it's ME/CFS I suffer from, who knows - something's still not allright. I started agomelatine treatment for the insomnia but am not getting very good results. I did do a holter monitor around christmas but don't know the results yet. My psychiatric doctor puts me in sickleave if I want to, I have postponed it a couple of times but since I'm obviously not feeling better I know it might be better f I accept it, the social isolation (eventhough I live in it right now) and giving up I feel it represents scares me though.

What do you do to keep going? The thought of me maybe never getting my life back is so big and painful I can't touch at it.

Posted

How I keep going is trying to help others even if it's only through this blog. I listen to music and now have begun to play. You can buy a used keyboard for almost nothing here in the states and have been taking lessons. I live in Florida so when I get discouraged I sit in the sun and look at my palm trees and lay around with my two dogs. I talk on the phone with good friends on days that I can't get out. I used to read books but have read so many I can't do that anymore. I look for hobbies that I can do at home just to pass the time during the day. Now I have started to sing with my songs and I have just written my first lyric. My advise is look into something that you might enjoy and then incorporate that into your life. I now have started dance lessons. I could only dance for 15 minutes at first, but now can for 30 minutes. All these things you can do with your daughter to have fun with her. Every little girl likes music, singing, dancing. I hope I have given you some ideas to look forward instead of where you are at now.

Maggie

Posted

I try to keep myself as occupied as possible, even though that can be difficult when I'm pretty much homebound. Doing some sort of volunteer work helps keep your mind on the outside world while helping others. That's one of the reasons I'm a moderator on this site. Seeing a counselor is also very beneficial to me. Are you taking an anti-depressant? That's also helped me...I also like the ideas that Maggie wrote about, singing and playing music, dancing if you can.

I also read a lot, and watch some television. I record my favorite shows so I can fast-forward through them and not get stuck just watching any old thing on t.v. I live in Arizona, so it's awfully hot to be outside during half the year or so, but when I can, I sit outside and enjoy the view.

And don't forget the Forum! Take care, and reach out when you need to. Don't be afraid to ask for help. Hope you're feeling better soon.

Posted

I'm so sorry you are experiencing so much disability still. Insomnia makes everything that much harder to deal with.

I do think that reaching out to others however you can do it is really important for mental health--whether it is virtual or in person. I know from experience how hard this can be when you are quite sick. Also whatever goals you can make for yourself and work towards achieving can be helpful. It's good that you are seeing someone who can help with depression. Sometimes depression needs to be treated with meds or therapy, and there is nothing wrong with that.

BTW, my great grandmother emigrated from southern Sweden to the US. I still have relatives there who I am in touch with!

Posted

Thanks much for the feedback! Great reading about what you do for yourselves. Gives me some inspiration. I (luckily) have 3 hobbies which I can do from home - I spin yarn + knit and then I'm also an old online gamer. I can still do these things most days, spinning yarn makes my legs go numb though. Most of the time I just focus on whichever it is i'm doing in the moment and try not to think too much about tomorrow but some evenings when I'm alone and too tired to do any of it it finds me. I'm a total TV-shows nerd too. Thinking of maybe starting meditation, I used to do this long ago. I have huge issues relaxing, I didn't have a good nights sleep in years feels like it. I still remember the feeling after a nights sleep, the relaxation and ahhh feeling, I miss it alot! The constant agitation in my body gets to me!

Agomelatine is a new kind of antidepressant which I got for my sleep, I have not noticed any effect on my mood though. I have tried most other antidepressants (SNRI, SSRI + TCA's) and felt really bad from them. I did not have these physical problems then though and it's quite many years ago so maybe I should try again. I try to tell my friends how I feel and I do have a therapist now, however my therapist is quitting her position in a month and I have to find a new one. I think one reason that I'm feeling this bad right now too is that I'm weaning off the tramadol I have been on for quite a long while for pain - they have an antidepressant effect. Maybe I should wean off them at some other time, I just started feeling uncomfortable taking them all the time and even when I was not in pain cause I get sick when I quit. I asked my pain management doctor for something else but I've tried just about all painkillers without much result. (I have chronic pain due to my tailbone being all messed up)

I believe it's like a million people who emigrated to US from Sweden back then, it's kind of cool! I'm a finnish citizen living and born in Sweden but I speak fluent Swedish. Where does your relatives live Momto?

Posted

I watch a lot of tv, which probably isnt healthy, but its an escape from reality and keeps me sane. I even have a tv list I made for my shows and it gives me something to look forward too. before when I was more stable and not house bound, I hardly watch any. I tried to read books, but I am way too dizzy to focus on the actual words.

for me, my depressive days are directly related to my bad pots days, and I have been mainly having bad ones lately. I know I dont have true depressuon because when I have a good day, I love to get out and go places. my doctor told me its pretty easy to figure out if your clinically depressed.... he said that people with it dont have the urge to live life, while I am depressed because I do want to live life and cant.

sorry if some of that didnt make sense, I just woke up and brain isnt working too well yet lol

Posted

Tramadol certainly could be contributing to your mood right now. My hubby was on it for a few months following a car accident and had a horrible time getting off of it (dark thoughts and terrible pain). He ended up taking nortryptiline to help with the withdrawal for one month and it really helped. I asked my neurologist about taking nortryptiline for my pain issues but he didn't want to prescribe it because it can cause tachycardia. Some doctors feel that because tramadol has both narcotic agonist and antagonist properties that it can't cause the physiological dependence that other opioids can cause. In my experience, tramadol withdrawal is actually very similar to opioid withdrawal, which can definitely cause depression.

Personally, I know that when my dysautonomia symptoms are worse that it's harder to stay positive, probably due to lack of blood flow to the brain. :rolleyes: Increasing my compression or adding more salted fluids to my routine can help.

Posted

Makes perfekt sense Dani! That's it. I have been severely depressed when I was about 20 (am 25 now) and I remember what it was like. No will for anything. Now I haven't lost the will to live but the means to do it. Fought like mad to get to university being a single mom without a good education and now that I'm there and halfway through I can't handle attending it anymore. Typical! Think that would depress anyone.

Yeah I think so too Thankful, last time I went cold turkey and I got so sick from it it was horrible. Definately not a very nice withdrawal. The serotonergic effect tramadol has makes it even worse urgh. I'm trying to be careful with weaning off though, I'm taking them every second/third day right now and it's been allright except last night, the withdrawal even more messes up my body temperature (can't handle the comforter on cause it makes me instantly sweat but if I take it off I'm so cold that in turn wakes me up too, doesn't even work putting half body in/half out, either so warm it burns or so cold it hurts. Frustrating!)

Posted

Dani, I do the same thing! I used to read a ridiculous amount but my focus tends to be a little blurry, along with my eyes, so I stick with the tv.

I do find that online social outlets about the most ridiculous things help me as well. I go to some pretty ridiculous forums for people with various interests completely not related to my illness but other interests in my life so I can think/talk about something else. It allows me more interaction with people.

I lean on my family (mom, siblings) when I need to as well. And when I get sad about it, I let myself.

Posted

I believe it's like a million people who emigrated to US from Sweden back then, it's kind of cool! I'm a finnish citizen living and born in Sweden but I speak fluent Swedish. Where does your relatives live Momto?

Most of my relatives are in Stockholm, some are in the Malmo area.

Posted

I force myself to get up, shower, get dressed. But I do cry and mope too. I try to do tasks like bake, walk, watch a movie

But it is so hard! it's normal to feel down, you have to let yourself experience some of it but you have to push through too

I tell myself "I'll be the most motivated person that ever was with XYZ condition"

Posted

I keep a daily mood chart for my bipolar disorder (which is pretty well controlled these days due to a variety of factors). I recently started keeping a note of what particularly triggered depression, since I've been having depressive spells for the last 6 months; every time it seems like it's depression due to dysautonomia making life difficult, not regular depression like I tend to have with the bipolar disorder.

For me sometimes it helps to be reading about the disorder, learning as much as I can about it. Also hobbies (like everyone said), reading something humorous to cheer me up, taking naps, focusing on what I can still do whenever possible (instead of what I can't do, although obviously it's one thing to say it and another one to do it!), eating some chocolate, listening to and playing music, etc. Sometimes just knowing that I won't be depressed everyday and accepting this as a kind of grief (there's another discussion about grief right now on the board) and knowing that it's a normal feeling and not dangerous, if that makes sense?

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