velvetmagnetta wrote:Camp Other, good gracious, I'm sorry you've been through this and are going through this. This must have been painful to write. Thank you for writing it.
Just being honest. Someone has to talk about it. I think the problem of suicidal thoughts, attempts, and sadly, suicides themselves is a real problem and it needs to be addressed.
And I've been there. Even now, occasionally, the thought crosses my mind. I am depressed. I try pushing it back, and tell myself that my situation is not going to be like this forever and remind myself that my symptoms have in fact been worse. It helps - to some limited degree. The other thing which helps is distraction and helping others with CLD/PTLD online, and telling them that even if they are in severe pain now and it sucks, it will eventually be less severe. For some, that's enough to hold onto. For others... it is much harder.
What you've written about the stages and the hierarchy of needs of one suffering this disease is so right on.
I can't believe how well you can put these most delicate concepts into words. I hope you will consider posting what you've written elsewhere - like on other Lyme message boards, etc.
Thanks. I think it's important to blog about Lyme disease and suicide, and may include my comment in that blog post. Not sure how soon - and it is timely no matter when I post the blog article.
I don't generally go on any other forums these days except this one. I was on MDJunction for a while. I have a hard time keeping up in different places and don't have the energy nor attention to divide so I focus on posting here, on Twitter, and my blog. That's more than enough at the moment. Feel free to pass my words on, giving me credit if you wish to share elsewhere.
You've posted this process you went through just as I am exiting the extreme pain stage - where I thought I would be ok if this pain would just let up a little.
Yes. Even just a small amount of improvement gave me hope. Been there.
I thought if all I had to worry about was fatigue, then, that's fine. I can do that. But as the moments of extreme pain become less, I am beginning to feel that exact kind of fatigue you described. And I'm beginning to look around at all that I have lost. And how this tiredness isn't allowing me to do anything about it.
I hardly even noticed the fatigue was there before because of all the emergency pain, but now - it's like I weigh 400 pounds! And I'm getting FRUSTRATED because as soon as I think I'm ok to do something - BAM - down-you-go. I just have to lay down for hours and hours.
This is where I've been the past couple years. I find I can type longer online and read online from bed or a sofa more than I can do other things without having to take a break as soon. If I chat with someone, though, I have to take a break sooner. The level of interactivity and immediate real time feedback begins pushing the fatigue forward, so I end up stopping my online use then.
But outside of this, it's been hard to stand up for any length of time and complete a household task or everyday errand. It's been too painful, and then the fatigue hits, and then I need hours of a break after doing something most people would consider minimal effort.
Aaaaggghhhhh...Supremely frustrating. Thank you for sharing your experience. I can at least be prepared for when the fatigue brings up "those thoughts" again. I didn't realize that this can happen. But now I'm starting to see how it can.
Thank you, Camp.
It IS frustrating, I agree. And it is a cycle of sorts, and I find that sometimes I can cope with my symptoms better than other times, too. If you're under more stress or external pressure, it can bring on the cycle - it can worsen symptoms.
Ultimately, finding ways to reduce pain (alleviating it completely is hard, the goal can be to be more comfortable rather than pain-free) and reduce fatigue are the best solution. It isn't easy, though, and it may take trial and error to find something that helps you as an individual.
I found very hot baths at my most severe helped with bone-breaking pain. There was severe pain in every bone in my body and every tendon. I spent a lot of time in the bath, staring at the ceiling, trying not to move and only moving to refresh the tub with more hot water.
I found making my bed as comfortable as possible helped. It meant getting help to get more pillows and lining the top of the mattress with them, and also using extra cushioning under myself under each major joint. I got my setup to a point where I found a position where I didn't move much at all - was forced to fall asleep on my back locked into position because the simple act of turning over on one side was excruciating and I wanted to avoid that at all costs.
Those two items helped the most, though they were truly inadequate for addressing the severity of the pain I experienced. But other than lots of antibiotics and some nortriptyline, that's all I had.
There is no one answer for what helps and I imagine different approaches work for different people. Just knowing things would eventually get better helped, psychologically, in getting over the hump. Not being forced to do anything or be under pressure to do anything but sleep and soak in the tub whenever I wanted and needed also helped me get through the worst of it.
That said, something really needs to be done about experiencing that severity of pain. Patients need more effective pain management and treatment. Patients need more support through these major challenges during the course of infection.