Trying to Keep My Chin Up.

I wish that I had more to say lately, but life has gotten awfully boring.  Being constantly sick doesn't make for a very active lifestyle.  I've had a cold that keeps coming and going for more than two months now and I'm getting really tired of it.  I've been getting migraine headaches nearly every day either because of the sinus pressure or the blood pressure medication that I'm on to get rid of the tachycardia that I was having over the summer.  I hate migraines.  I've been getting them since I was a little girl and from time to time I go through spells where they're especially bad; they leave me unable to do anything.  I find myself anxiously waiting for a time when it will be acceptable to go back to sleep as that's the only thing I can do that doesn't exacerbate the headaches.  And since I've been on the Imuran, a strong immunosupressive drug, I've been getting increasingly fatigued, sleeping up to 14 or 15 hours a day and still having no energy when I'm awake.  

I feel terrible that BF has to go through this crap with me.  I'm no fun.  I'm rarely up for going out.  In the last two weeks we've spent two evenings hanging out at my dad's house and another shopping at Target for a few hours (where I get to feel like I'm 80 years old riding around in one of those electric chairs).  I try to be there for him as much as I can emotionally to try to make up for what I can't do and where I can't go and lately we've been communicating a lot better, which certainly makes things easier than keeping everything bottled up.  I just hope something happens soon to alleviate some of this stress.  We love each other to death and thank god for that because I'm sure we wouldn't have lasted and wouldn't have a hope for a future if we didn't, but we're both extremely committed to making our relationship work and so far that commitment and our mutual adoration has made it possible for us to work through the rough spots.  

I just wish that I could be the person that I want to be.  I want to be his partner, but even my everything doesn't come close to half of this relationship, or the rent, or the housework.  I want to be a fun parent,  but I can't get up and down off of the floor or pick him up or walk down the street to the park.  I want to have a life and career of my own, but committing to be anywhere but my couch isn't something I can do right now.  I can't have a schedule, I can't guarantee the use of my hands or that I won't have a migraine or that I won't be out of commission for one of a thousand other reasons.  I feel useless and that's depressing which only compounds the feelings of uselessness.  Boredom feeds into that a good deal.  With nothing to do I have plenty of time to sit around and think about what I wish was different.  I can't keep up with the hours of reading, surfing the internet, tv, and movies for much longer without something changing.

But at the same time there's a good deal of change on the horizon, I just have to be patient for a bit longer.   My disability still hasn't come through, but I haven't gotten a "no" either, just a request for more information.  The money will really help, especially with the economy being so crappy.  There have been tons of layoffs at BFs job recently and though his job is secure for as long as the company is around, he won't be getting a much-deserved, much-needed raise anytime soon, so as soon as I can start pulling in some money we'll be in better shape financially.  I got the results of my pulmonary function tests back, which will determine my eligibility for the stem cell transplant, and they seem to be in the right range to be eligible; I'm using 79% of normal lung capacity and 77% of the oxygen that I take in is getting into my bloodstream.  The numbers needed to be less than 80 but more than 60, so I'm going to see a rheumatologist at Jefferson University Hospital to get things moving and hopefully it'll happen early next year.  I'm also seeing a new psychologist this week who specializes in patients with chronic illnesses, so hopefully talking to her will help and maybe she'll fiddle around with my antidepressants and anxiety meds a bit to see if that helps.  So I suppose I just have to wait and be content that things might be changing soon and until then just try to keep my head up and remember that I'm not just lazy and I'm not making all of this up, that I am legitimately ill and I'm doing what I can to live as full a life as I'm able to.  It's just hard when you have an illness that no one can see and it's often difficult to not think that I must just be crazy...

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