A little over four years ago I had gotten up from writing a report for one of my college courses to go get a glass of water (or something, I’m still pretty fuzzy on those details) and the next thing I remember my husband (who was my boyfriend at the time) was standing over me, freaking out. I had blacked out and tested out gravity… which was working… and came to about 45 minutes later, screaming. I was dizzy. My brain felt like somebody had driven an ice-pick right in the center of it and I was a little in shock. He rushed me to the E.R. and so we began down a journey that still continues to this day…
Months and months and months I was having severe migraines, constant dizziness, annoying constant headaches between the migraines. Passing out 30+ times a day. The longer I was passed out, the more time I would forget. Minutes, hours, days… I would sometimes even forget who I was, where I was, who my husband was, how to speak, etc.. for a few minutes after I would come to – only to go back out again. I went from doctor to doctor, from specialist to specialist (including some that wouldn’t listen to me because I was a ‘dumb patient’ and would keep upping medicine that actually made everything worse) until finally landing a doc that actually gave a damn and didn’t see me as just another numbered face in a crowd. I was diagnosed with P.O.T.S., Basal Migraines, Syncope Migraines, and a few other loverly things. My medicine was trial and error but over time, my migraines lessened in number and instead of blacking out dozens of times it was under ten or so. Life adjusted and I went on. My awesome super-dog, Bently trained himself (after watching Mr. Chaos a few times) to flip me over if I was passed out face down so that I wouldn’t suffocate. He also picked up on when I might pass out or when a migraine might come on suddenly – he still does, because he’s a champ. I was self-employed, quite successfully for my standards and I was still me, somewhat.
For a little over a year life was looking up. I became a Mrs. to my Mr. Chaos. We have two amazing dog-children and our little family/pack is nifty. Life was good.While I was dealing with daily annoying headaches and a couple of migraines a week (with random blackouts) I was trying to be back to “my old self” as I could. Still pushing and going the extra mile because of my silly knack for trying to please everyone and their dog. Then, after returning from an out-of-state business trip I got really sick – out of the blue. And I mean REALLY SICK, sicker than I had ever been in my life.
I couldn’t keep ANYTHING down. I dropped 20 lbs in less than a month. Over 75lbs in less than 4 months. Started to lose my hair. I was in so much pain. I went to what felt like a bazillion doctors and specialist – all of which would just look at me and my labs and scratch their head because they didn’t know what was going on and would then pass me off to another doctor or specialist. I had procedure after procedure to try to find something. ANYTHING. Tubes and tiny cameras shoved everywhere. So many blood panels drawn. First they thought it was Crones. I was experiencing gastroparesis since my digestive system was so fucked up. My esophagus was so raw from all of the stomach acid. It sucked. I was so completely mad at the world. WHY?! Why was this now happening to me? Who did I piss off up there to have this wrath of suckage bestowed upon me. I had zero energy. Everything hurt and I got REALLY depressed. Luckily I have an amazing partner-in-awesome who went above and beyond to take care of me.
We finally got in to see an Immunologist after one of my blood panels showed my ANA was completely off the charts. Finally, a speck of light at the end of a very LONG tunnel. More tests. More medicine trials. Finally she came to the conclusion, much to House M.D.’s dismay – that it was Lupus. Now, let me just tell you that I can’t do anything “normal” and in fact my particular brand of Lupus wasn’t/isn’t one of the four main types. No, no, no… I am special. I have a severe, rare variant of SLE (Systemic Lupus Erythematosus). Oh and some early onset of R.A. and some other little goodies, too. Go me for being an overachiever in the chronic illness olympics. TOTALLY WINNING. Did I mention that while all this was going on, my previous migraines and things decided to come back with a vengeance. Oh I was such a mess. One, scary looking mess.
That was a little over a year ago since we found out about those little gems. My symptoms have gotten a little worse and I’m still doing the whole “treatment-change-a-roo” every few months to try to lessen symptoms. And still this adventure goes on.
Now, you may be asking yourself why the hell did I just dump all of that history-suck on you…
I did it for two reasons. The first, to give you guys a little bit of history as to my spoonie-journey. The second to tell you that life still goes on… and that it does get better if you let it.
I have bad days. I have some days where I cannot get out of bed to save my life because I have zero energy and my joints are so stiff it hurts to move. Days where I can’t keep much down other than liquids at best. I cry a lot. I get sick at the drop of a hat. I get frustrated with myself and the person who I have become. Not by choice, but by circumstance. Sure, in my brain I am still the same sarcastic, nerd who must do all the things but now my body is limited in what I can do each day. I rock an awesome face mask whenever I have to go out in public. I have a wig collection so I can change my “hair” at the drop of a hat. I have to constantly remind family members of my limitations, even if that means missing out on family gatherings. I use the term “spoonie” on a daily basis – and then have to explain myself about 50% of the time after I use it.
And even after all that, I have good days. Now you wonder how… it’s simple and can be put into two words: BEING POSITIVE. When you have a chronic illness (or many in my case) life sucks. There’s no nice way to put it. It does. And it does, HARD. You will be depressed, in some degree or another – and yet staying positive, even if it’s for one thing out of your day will then be a bright spot. A spot that will grow, after a little mental practice and patience. I learned that even though I probably may never be back to my ‘old self’ in both mind and body, I will not let me illnesses dictate who I was and am. I won’t lie and say that I am positive 100% of the time… because that’s not true. Maybe I will reach that zen like state, but I don’t see it any time soon.
In the meantime, I will try to find the awesomeness in everyday spoonie life and try to remind others how awesome they are. I try to find the beauty in the little things. Or the comedy…when in need of a laugh (or when I want to make my husband squirm). If I am having a bad day I will try to lift others up on social media. It costs ZERO spoons to be kind to another person – especially if you’re sending them some love through the Interwebs. I have embraced hobbies and while I cannot work a normal job – I make use of my time by staying as busy as I can, spoons-willing. I am one of those people who functions a whole lot better when they’re being at least quasi-productive in some form or another. Hence this blog and my makeup-thing…
In the months that I’ve started to post “makeupy” things on IG, I have been able to connect with so many strong and talented spoonies out there. It has helped to show me that while my illnesses are rare – I am not alone. And life is still good.
You have to just take one day at a time. You can’t keep a running tally in your head of how many sucky days or sucky things are going on in your life… that way leads to the Dark Side (and I don’t mean the fun one with cookies). If you are dealing with any kind of chronic illness you will blame yourself. I blame myself sometimes – a lot less than I used to – but occasionally it slips through. My husband reminds me that “I didn’t DO anything to cause this to myself” and that getting my illnesses were completely out of my hands. It has taken a long time to accept it, but he’s right. Sometimes our bodies just get wired stupidly and there is nothing we can do to stop it. Silly Nature. …but I’m getting a little off of topic…
In taking things one day at a time you learn to appreciate the little things. It’s okay to take baby steps – they will still get you there. You learn to use your spoons wisely so you’re not put out on your ass for several days after the fact. You learn to love yourself again. And that last one is the most important of all.
You are amazing. Truly. You are the ONLY fucking person on this planet who can do the shiny, kickass things you can do. It’s pretty awesome when you think about it. There is only one of me (as I am fairly sure that the world would end if there were multiple “me’s”). One of you. You may not see it, but those around you do – and if they don’t… I do (and I might not even know you, but I believe in the awesomeness that is you). I believe in you, Peter Pan. And when you’re running low on spoons, it is totally acceptable to dawn your super-awesome, batman footie pajamas and take a nap. (I highly suggest getting footie pajamas. They are awesome. Just like you!)
It does get better. And even though you may not see it – you are worth it.
If you ever need to vent or just want to chat, my proverbial ear is always open on IG or via email. You do not have to go through anything alone and I am here for you.
I apologize if I have rambled or if somethings don’t make a whole lot of sense. I felt that I needed to put this out there to the universe and if it has helped just one of you – it would not have been for nothing. In the betweentime, I hope you all have a wonderful Friday and a gloriously awesome weekend. Know that I love you and that you are fucking amazing. Oh and pardon my language for this post, but it was a stylistic choice on my part to convey as much feeling as I can. #sorrynotsorry
If you are have an awesome tip as to how to stay positive, let me know in the comments. I am always on the lookout for ways to continue in my quest to stay positive.