To know or not to know….

In biology seminar the other day we started discussing a topic that I personally find very interesting. Have any of you hear about 23 and me? It is a company that provides DNA analysis, along with possible risk factors for diseases. It’s a really cool idea, and the fact that anyone (well who can afford it, although it is not very expensive) can send in a blood sample and get their results, but should we be doing it? Do we really need to get this information, does it actually help us, or does it cause more harm? Do I really need to know that I might have a 3% higher risk than the general population of developing breast cancer?

Some might argue that knowing this might help eliminate things from our environment that further increase or chances of getting this disease. If I know I have an increased chance of brain cancer, I would eliminate other things that might cause it. My opinion is that you should be implementing these changes anyway, and that if you were going to you would. Why should I wait to know my risk in order to be motivated to eat healthier, not smoke, or exercise more. I should be doing that regardless.

For me though the biggest problem is should I know, or does it just create a self-perpetuating cycle. If I know I’m at risk for it, it stands to reason I am much more likely to worry about it, for it to occupy my thoughts more than it would. But why should a disease that I might not get, or even if I do get it, cause me undue stress before I even have it, if in fact I ever do. Does the stress of knowing, make it more likely to actually get something you might not have? Does it become a self-fulfilling prophecy?

If I think back to that magical time before.. before the autoimmune arthritis that has made my body its home, that has started a war that I might never see end… would I have wanted to know. Would I have wanted to know that I would have, could have, got this awful disease. NO! It would have tainted that before, made it less carefree. Why would I have wanted to live with that knowledge, it wouldn’t have changed the outcome, wouldn’t have changed how my life is now, but it would have changed how my life was then, and not for the better. I already have to live with this disease now, with the harsh realities and devastation of it. I am so glad for that period where I didn’t know what was coming, didn’t need to, when the words arthritis, autoimmune, chronic meant very little to me. If I could go back and chose to know, I would choose not to, because sometimes knowledge isn’t power, it’s not that silver lining we think it is.  Knowledge isn’t always a blessing, sometimes it’s a curse. Sometimes it’s just better not to know.

(Just so you know I have not participated in 23 and me, and all of this is merely hypothetical)

 

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Stuck between a rock and a hard place

I don’t know if I have talked about fatigue before, I’m sure I’ve mentioned it, but fatigue for me is a big part of my disease, and has a profound affect on me. Many people with autoimmune arthritis, autoimmune diseases or chronic  illness in general suffer with fatigue to some degree. For me my fatigue is often the worst when my disease is most active, but it changes from day to day, and even a cold can set it off.

I think that fatigue is one aspect of this illness that is the hardest to deal with, and which is really misunderstood by the general public at last. Fatigue can be just as debilitating as my joint pain, and systemic symptoms sometimes even more, as I can often push through the pain, but find it very difficult to push through fatigue, and often hit the wall if I do.

To give you an example, I remember this one day while I was still at boarding school, shortly after I had been diagnosed. It was a Sunday, and I woke up at 10 to go to brunch with my friends. By 1pm I was back in bed, sound a sleep, as I was just too exhausted to do anything else, even thinking, sitting, watching everyone else interacting was too much. I slept until 7pm, when my roommate woke me up, wanting to know if I was alright, and wanted to go to dinner. I did want to go, but knew it was too much energy to get there. So instead I showered and attended my house meeting (which we had every Sunday, and which everyone had to attend), after which, at just 9pm went back to sleep. That day I slept for 19 out of the 24 hours. And let me tell you getting through the other 5 was hard. It was hard to keep my eyes open, it was hard to concentrate, hard to think, hard to want to do anything else but go to sleep.

This is the hard truth that a lot of people don’t know. Fatigue isn’t just being tired, it is not something that is easy to push through, it is often something that you have to wait out, give into, and I hate giving in, but you can only struggle against it so much. Fatigue fights back. Fatigue is soul sucking. It’s like being a zombie, and no amount of sleep makes it better. Even after my pretty much day long sleep I was still just as exhausted as I had been waking up. It’s a horrible feeling.

But right now I am dealing with something that I am finding even harder than the claws of deep fatigue. At the moment I have fatigue, but it’s not as bad as it once was, thanks to my Remicade infusions. The thing is I have enough energy to be bored, and constantly thinking of things I want to do, but don’t quite have enough energy to do these things. I am just hoping that my infusions will kick in a bit more, and just give my energy levels that little push that they need. Then maybe I could get around to backing the cake that I have been meaning to do all week.

 

Technology dependant: HAWMC Day 23

  • Write about how your life would change if there was no social media.

I think I would feel a lot more isolated with my condition, if I was not able to connect through the internet with others with my disease, autoimmune diseases, or just chronic diseases in general. Social media has allowed me to truly see that others go through the same or similar things to me, as I am able to glimpse into their lives, via blogs, Facebook, twitter, support groups and so many other means. It reminds me that I am not alone, and often validates what I am feeling. The anger, the frustration, the isolation, the sadness, and the joys and happiness too. It means that there is someone else there who I can talk to, who knows exactly what I am talking about. This allows a very different kind of support to that which your family or friends can give you. Even if that is great too. It allows me to bounce ideas off people who know the ins and outs of the diagnosis, the doctors visits, the meds, and so much else. To gain knowledge from people who know more, have experienced more or have been battling these diseases for longer than I have, or just has taken a different approach. It also allows me to give this back to others, to help them when they need some guidance. To comfort them when they are in that black hole that is grief and despair. To celebrate their highs, and stand strong through the lows. To be a friend who knows. This is the greatest gift that this experience in the world that is social media. Something that would be sorely missed…

Social media can be that life line that you are looking for. In some way it was this and so much more for me. without social media I wouldn’t be the person that I am today.

 

HAWMC DAY 5: Aspirations

I decided to try my hand at both again (because I was bored at my infusion, so decided to pass the time by writing)

  •    “If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue. What is your biggest goal that is now possible?

If there where no limitations. No challenges or hurdles to overcome; I would want what I think anyone with a chronic illness would want. A cure. But I guess even with Money, time and no physical limitations it still wouldn’t be possible now. No, a cure will take time to develop/find. Even then, who knows…

So I guess I would donate a vast majority of the money to on organization that puts almost all of the money directly into research, or give directly to research projects that look promising. This would help incredibly in the creation of new and better drugs, allow researchers to delve into the systems that are at work in these autoimmune diseases and also contribute to helping to find a cure

I would use my time, energy and money to educate the general public and even physicians about autoimmune diseases. Especially the rarer ones, and less known symptoms and presentation of the more common ones (like RA). I would bring awareness to invisible illnesses, and how people can be sick (often even severely ill) without you even knowing it. Maybe then someone with an invisible illness can use a handicap spot without been harassed or stared down? Wouldn’t that be wonderful?

I would try to advocate and bring awareness towards the patient’s role in the control and management of their disease, and advocate for and increase in the number of patients and doctors that are working as a team. As it is greatly beneficial for patients to know what their disease is, how it works, what treatments are out there, in order for them to make in formed decisions in regards to their chronic illness.

  •   What’s your one, three, or five year plan for your Health Activism?

To be honest. I don’t really know. To still be active and invested in it would be a good goal I think, whether I’m in remission or not. I would like to have helped at least one person in that time, or inspire someone to help someone else.

HAWMC DAY1

So the day has finally come to start the Health Activist Writer’s Monthly Challenge. So for day one the prompt given was:

  • Why you write – tell us a little bit about why you write about your health online and what got you started.

I decided to start writing in order to help spread awareness about autoimmune diseases, and how serious and consuming they can be. I think that lots of people, even some doctors, know very little about what having an autoimmune disease like Crohn’s, Behcet’s, RA, Ankylosing Spondylitis, and many many more, truly entails. What all the symptoms are, especially the less known, and what it is like to live with one of these diseases. I wanted this blog to be like a window into my world, a life with chronic illness, so that anyone who wants to  can better understand.

It is a place where I feel safe to say all that I feel, a place to rant if I need to. A place to help me work through all of this, a project that I have found healing.

But most importantly I wanted  to write in order to help people who are diagnosed with autoimmune diseases, newly diagnosed and the seasoned ones as well. So that, especially someone who is newly diagnosed, can see that there is life with autoimmune diseases and chronic diseases (any chronic disease), you just have to keep picking yourself up, keep trying and moving forward. I wanted to do this, because I remember how it was to be newly diagnosed. To be afraid, shocked, and unable to truly  grasp what it all meant, how it would impact me. I honestly thought in the beginning that I would take some meds, and in a couple of weeks, maybe months at most, I would be better. I would be ‘normal’ again, and no-one lead me to believe otherwise.

Soon I realised that no-one who hadn’t experienced what I had could truly understand me, understand my struggles, my life. It was not for lack of caring nor trying. It was not their fault, but non the less it made me feel so alone. There where even times when I felt like I was the only one who had ever felt like this, ever experienced what I had. Even though I knew that wasn’t right. But common sense doesn’t always take precedence over emotions.

When I found other blogs about people living life with chronic illness, participated in forums on the topic, I didn’t feel as alone. I knew I wasn’t the only one, trying to stay adrift in this harsh sea of life, and it helped.

So I wanted to pay it forward. Start my own blog, and maybe one day, I will have the honour of helping someone else.