Well - after having about 24 hours of feeling good - had a rough night. Burning hip, shoulder, hand, finger pain that would just not let me get comfortable. I think I slept about 3 hours which 3-4 hrs is my average. This is really getting me down & I feel like it is making me depressed. I know it is making me depressed - I feel like I am not the same person anymore. I always try to be positive and have strong faith but this is really getting the best of me. The constant pain and lack of sleep is miserable which I am sure you all know. I can't take the muscle relaxer (10mg cyclobenzaprine) because it makes me feel too drugged up - makes me feel like I never wake up the next day and I have to take care of my 16 month old son. I had to quit my job over a year ago because of this and it is getting more difficult to take care of my son, do simple things, walk, and I am to the point of where I am going to have to start paying people to do my yard work and possibly clean house. I am terrified of the winter that is soon to come because shoveling snow just about killed me last winter. I can't do anything fun/active that I used to do - haven't kayaked in over a year, biked in months, can only go on short walks. It is a struggle and sometimes only by the grace of God with Caffeine and adrenaline that I get through my days.
At what point is this considered a disability? Have you applied for disability (United States)? Success?
Guidob--take heart. I don't want you to get mad or more stressed but you know that things look darkest before the dawn! So many of us have been and sometimes frequently re-visit where you are right now. Applying for disability won't change how you feel inside (although it might well allow you to stop working--but maybe not). The more pressing is getting your disease under control and getting some sleep. Neither of these, as you very well know, are quick fixes.
It seems (to me at least) that you aren't on the _right_ regimen of medications. If your inflammation were in check you wouldn't have issues with pain and swelling and insomnia. So that's the place to start. You can't treat only the insomnia--but there are things you can do to help it as you know from your other recent thread. I didn't sleep in the same bed with my partner for months because of nightly bouts of insomnia while I switched off Enbrel, on to Humira and before the Humira really kicked in. Months. On the couch. Awake. In pain. Writhing. Sweaty. Suffering. But it DID end when the Humira finally kicked in and my doctor and I figured out some issues with neuropathy in my toes which were causing a lot of pain and nerve action (which was waking me up--I never had trouble _going_ to sleep, I just couldn't sleep past 2 or 3am).
So, I say consult your new rheumatologist. Call. Stop by the office. Make your presence known in a polite, assertive and frequent manner. GET HELP. Make this your primary focus. And remember that it WILL get better.
I leave you with the sage words of my partner: "Everyone needs staff". It may hurt your pocket to do it, but find a young strong kid (or in our case two great guys who spend the winter at the homeless shelter) to shovel your snow. We feel good for helping them out and they LOVE to work and get referrals. Remember, you are now in a new phase of life. And you need help--hard as it may be to admit it.
I hope for nothing but the best for you. And I hope you don't think I'm lecturing. I hope I'm not. I'm simply offering another point of view.
(PS. if you search on "disability" you'll find LOTS of info. And there's also a member group on filing for disability if you want to join it)
Thank you, janeatiu. I needed that. It is just hard because you have one good day and think you are feeling better then you fall apart the next. Its a roller coaster. I felt much better after my son woke up and I saw his smiling face. I don't know what I would do without my beautiful family to support me. It's hard to give up my yard work and snow shoveling - I love doing those things and I feel like I'm giving up…but you are right, I am in a NEW phase of my life that I need to adapt to. Thank you for your words of inspiration.
