Hi All! I am bright and cheery today (which if you’ve read ANY of my posts in the last 6 months you’ll know how very rare this is indeed)! It’s the fourth of July, but certainly not what I’m going to write about. I’m not going to write about Iran or politics or religion. I’m not even going to write about spirituality or marijuana use for pain – nope – not me. I’m using today’s blog post to talk about suiting up and getting your game on – – Get out there and play life — Damn It!
As any and all of you out there with a chronic pain issue OR with loved one in that situation know well our lives all get eaten away slowly but surely by this monster or demon called disease. Whether it’s a known disease or not – it’s ripping the life force directly out of us – ALL OF US. I definitely am counting the caretakers in this big bowl also because chronic pain chips away at our tolerance for other things and we start to see life very differently than our peers. Before you know it 5 years has gone by and what do we have to show for it other than more pain or worry wrinkles? Well… I wish i could let you whine and moan about how life is being ripped out from under you BUT that’s not what this post is about – it’s about the exact opposite.
HOW TO REBUILD YOUR LIFE – IN OR OUT OF PAIN (no matter how excruciating)
I have finally come to understand a few things about dealing with my illness and myself. Whether you have RA, Lupus, Chronic Pancreatitis and Diabetes ( i have all of those) or some other set of diseases, these are some things i’ve recently come to realize. I can’t continue to watch my life slip away like this. Even though I’ve become highly functioning again (nowhere near where I once was) I need to keep a few rules in mind. I so badly wish i did this the entire time I was so ill rather than waiting 6 years into it. What a huge mistake. Now, I’m having to pretend I just moved to Los Angeles in order to cope with the loneliness better. FIRST RULE: I MUST CALL… As much as I don’t want to call a single soul, I must at least TRY. I promise to call at least 3 phone #’s on my call list. This goes as a rule EVEN if I’m in bed the whole day unable to get up (there are plenty of those). This should be split up between doctors, insurance company (or business-type call), and one friend. IF I had done this all along I would not have to be in so much agony over the pathetic stacks of paperwork I still have left to complete. SECOND RULE: “I’M TOO SICK” IS NO LONGER A VALID EXCUSE. This means that I must find a way to do the bare minimum of 15-20 minutes of email every day. It’s horrific to wake up one day and realize your credibility’s in question because you never reply to anyone. If I need to find a way to hire a helper for ten hours a week – then I need to find a way to do that. If you pay them $10/hour (more than minimum wage) that’s only $100 a week! I will find a way to do this from now on. My life is worth enough to not give up on it. THIRD RULE: My caretaker is not “my bitch”. I should try to rely on myself for every single thing possible. I should evaluate ALL things my caretaker does for me and try my very best to take over some of the responsibilities again myself. The BIGGEST mistake I made when Jax still lived with me is that I relied on him to wake me up, to remind me to take my medicine, and to remind me to get off the computer (STOP working) and eat. I was a diehard workaholic because it helped me NOT think about the pain. Jax never resented me for these, but it was all of this small stuff that ate away at HIS independence. He needed to be free of me when he was out of the house and in it honestly..but I thought that if I gave him little things to help me with that it was beneficial in some way. IT WASN’T. Jax was and IS amazing – but I’m an adult and even if I’m really sick I can wake myself up to an alarm clock. Jax had enough to worry about.
There are so many more items like these. Perhaps if I’m in the mood down the line I’ll continue to write more of these. Essentially, I let myself kick and scream a little too much (in my own sound opinion) and therefore I lost so many “friends” in the process. I kept thinking that I simply didn’t have the energy for it. And perhaps I only think it’s possible now that I’m functioning again…but I do think I could’ve made more effort even FROM bed instead of totally tuning out. Now, I’m having to try so much harder to make new friends because I rarely have enough stamina to work a day AND go out socially that evening…. I know all of this is really easy to say I’ll do – and it’s an entirely different matter to actually do it.
BUT, simply put I wish I had my old life back.
I was very successful, had a full house of friends, had a “life” outside my back porch and I was full of energy and life – some call it zest. I can recall the zest from time to time but nothing like I used to do. Now it takes energy to just get my work done each day – much less have the energy to go out or see a movie. I lost so many “friends” that now loneliness greets me like an old blanket. It’s awful.
More chipper days to come (so they say).
love, Sasha xoxoxo