Having a hard time coping...

[DDxrty]

I hate to make this a sad and negative type of post, but I’m really struggling and almost suffering right now.

I’m a 24 year old male, I’ll be 25 in three months. I was diagnosed with POTS and hEDS at 14 years old. My whole entire life has revolved around trying to feel “better” or basically trying to just survive let alone thrive.

Looking back at the last decade, I’ve had some fun days, but honestly it’s just gotten worse and worse as the years go on and on… I have POTS and Hypermobile Ehlers Danlos Syndrome like I said, but I also have Narcolepsy, GERD, Fibromyalgia, major depression & anxiety, Cerebral Spinal Stenosis, probable MCAS, and possible Multiple Sclerosis(I see a new neuro doctor in a week)..

There’s just something really wrong going on here in my life - I’ve dealt with severe chronic fatigue and chronic pain issues for many years now and it’s debilitating, but it hasn’t always been as debilitating as it is now. I’m on very “strong” medication to try to combat the fatigue/Narcolepsy and I’m on somewhat “strong” medication for my chronic pain/Fibromyalgia as well…

And things still are not managed well enough. The absolute worst thing about all of it is that nothing feels “real” in my life. I suffer(Yes, suffer…) from severe derealization and depersonalization all the time. Nothing ever feels real and I always feel like I’m in the biggest fog and I have a very hard time thinking and sometimes explaining things or remembering certain things very frequently..

I must deal with a hundred different symptoms without exaggeration. On top of all of this, of course it’s 85-105 degrees outside and my POTS symptoms are flaring up badly to the point that I had to just get Pedialyte and electrolyte solution on top of the sodium chloride tablets that I already take every day of my life. I’m moving to be living on my “own” for the first time in my life as well starting literally tomorrow night… So the extreme stress and moving hasn’t helped me at all obviously. I’m very extremely stressed and I’ve been in a bad mood for days now. I just started a new anti-inflammatory medication on top of my other pain medication and they just increased the dosage of my anti-depressant medication as well but clearly it’s not helping me overall yet at least.

I am literally on 14+ different medications and take like 25 pills per day which is absolutely ridiculous for someone my age in my opinion. I mean for anyone at all that is ridiculous. Who would ever want or need to take that much medication, but I guess it all has its purposes but I’m sure that I feel “funky” overall partly because I’m on SO many different meds. It’s something that honestly scares the heck out of me too being on so many and what it’s doing to my body.

All of this together what I just mentioned combined into one thing is what is driving me completely insane right now. I’m sick and I’m sick and tired of pushing through the pain and pushing through the fatigue and tachycardia and literally everything. It’s all getting to me way too much and it’s very upsetting that I’m dealing with such a crappy life and lifestyle. 
I really don’t see it getting any better at all. I can’t believe that my life has gotten to this point. 

 

[Pistol]

Dear @DDxrty - I am so, so sorry you are dealing with all of this at such a young age. No wonder you are at wits end! I have been there as well, I did not know how to go on struggling like that with no relief in sight. Have you considered talking to a therapist about your feelings? When I became disabled I developed depression from the grieving process, and talking to a professional therapist as well as my PCP about the way I felt made a huge difference. Medications can help with our symptoms but LIVING with the disease is up to us, and that is never easy. Putting our misery into words is helpful by itself, but therapists can teach us ways to cope with all these negative emotions so we dont have to drown in the swamp. Please reach out to your doctor and ask to see a counselor, it has turned my life around when I was at my lowest. Be Well!