Living life with multiple chronic illnesses…. and some other stuff!

Monthly Archives: April 2012

I just recently stumbled upon Single Dad Laughing, a fantastic blog written by Dan Pearse. The link will open up to a post I just read (from 2010, currently being featured) about people and their pain and their need to compare their pain with the pain of others. It’s really a great post and urge you all to read it!  I’ve had people tell me both that their pain is worse, or that their pain couldn’t be as bad as mine.

As someone who lives with a very rare connective tissue disease that causes many painful dislocates and partial dislocations on a daily basis (among other things) I deal with a lot of pain. Thankfully to a good pain regimen, I’m not in as much pain as I was before it. The most pain I’ve dealt with was when I had wide spread nerve pain. It felt like my whole body had the worst burns of my life and then being rubbed over with sand paper. I just laid in bed crying because moving hurt, cold hurt, hot hurt, clothes hurt, anything touching my skin hurt. Now I have some joint pain, some nerve pain in my limbs and feet, sometimes awful itchy due to nerve issues, and  of course the pain of the dislocations, but it decent even compare to that time before the meds.

Having said that, I make sure I tell people this one thing, that their pain is their pain. I don’t know what it feels like, only they do. I only know what I’ve felt. Sure compared to most, I’d say I have a pretty high tolerance for me, but that doesn’t mean the other person isn’t experiencing the worst pain they’ve ever felt.  I get both sides of the spectrum. Some people will tell me that their pain can’t be anything like what I deal with. Well, in a way, that’s true if they’ve never experienced nerve pain or dislocated joints or arthritis. But I’ve also only ever broken 2 bones in my lifetime. I don’t remember the first, and the last two were a bone in my hand and a bone in my foot, and I walked on that foot for a week before they found the break. I was 11, so it couldn’t have been that bad. Sure it hurt, but I was still able to walk. Then I also get the people where who say I mustn’t be in that kind of pain all the time… no one can live in that kind of pain like that!!! Well, yea they can, and they do. I know a lot of people who, in fact, DO live like that. My mother and I are two of them and I’ve met a lot of people with the same illness or similar illnesses who do. It’s all a matter of perspective, really.

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When I first got really sick with the EDS and all that came with it, I was still in therapy trying to recover from Anorexia. I had managed to stay at a healthy weight for a few years and felt really good about it, both mentally and physically. Healthwise, I was still struggling and trying to figure out how to go about my care. I’ve had lots of ups and downs since then, along with a lot of trial and error with different medications and some that came with some greatly unwanted side effects. The most unwanted… weight gain. First it was only 5-10lbs and ok, I could deal with that. Then I started to develop severe GI issues and slowly started cutting things out of my diet, which would make most people think that I’d lose some weight. However, when those foods consist of vegetables, most fruits, and other forms of fiber and I’m left with basically simple starches  it’s easy to put on the pounds, clearly. 

Last summer, I was able to get back to walking and was up to about a mile a day, then all of a sudden I was hit with a wave of fatigue that I haven’t been able to shake. Every few days I try to do some small exercises, nothing to crazy as I know my body has it’s many limits. The problem with it is that the next day I’m completely useless. It doesn’t seem to matter how much or how little I seem to do, I’m completely useless, to the point where I am literally FIGHTING to stay awake and keep my eyes open.  It’s not just with exercise, last weekend N and I went out to dinner with some friends and it was about a 1.5 hour car ride each way. The next day I was seriously struggling to stay awake. 

I see my metabolic doctor on wednesday and am going to ask him about ideas to help combat this fatigue issue and about seeing a nutritionist. I need to figure something out because I’ve noticed a big difference in my pain levels since putting on this extra weight. That, and I want to feel comfortable in my clothes again and feel good about myself in general.