Thoughts...

When you're living with a chronic condition and spending most of your time at home, you do tend to have a lot of time at your hands to just think about things. Some thoughts can be dreamy, some are brilliant, other thoughts slightly bitter- though those aren't many. 

Often I just think about how pretty damn good my life is!

As much as it sucks to live with a chronic condition that may or may not progressively worsen, I can honestly say that I'm not bitter about my situation, despite waking up each day feeling like shit most of the time and having to pace myself all the time to avoid the worst flares. 

Like with so many other things, I've turned my condition into something positive instead. 

Now how can anyone turn a chronic condition into something positive you may wonder?

It's actually not that hard, you just have to find the positives in your life and make sure it outweighs the bad things. 

The positives for me in my battle against chronic illness, is the people I've gotten to know thanks to living with this crap! 

Thanks to a genetic mutation that I wouldn't even wish upon my worst enemy, I've gotten to know some of the most awesome people walking this planet! Friends I wouldn't trade for anything! Friends I'd cross oceans for. Friends whom I most likely wouldn't have gotten to know had I not been fighting this battle against Ehlers Danlos Syndrome! 

In utopia, both my friends and I would know each other, without either of us being chronically ill. But seeing how this isn't utopia and we are battling a chronic condition, I'm just so grateful to have all those people in my life!

And don't assume we just talk about illnesses! We talk about everything between heaven and earth and beyond to the edge of the universe and back! 

I have the best family and cat you can imagine, and the most awesome friends ever! What more can a human being ask for really?

There are some things I'd like to change in my life, situations the EDS and its effects on my body has put me in. But I am working on making those changes and I'm positive that I shall succeed with it too! Determination can get you really far!

Of course, there are days where the EDS is just being pure evil and the pain is so bad I cry and just want to scream, and I do spend many nights awake, not seldom because of pain. But I ALWAYS remember the positive things in my life, and that gives me the strength to fight and to come back again, and the strength to handle a life with chronic pain.

On top of everything else, I've learned to appreciate life in a different way, including appreciating even the small things that most people take for granted. 

In all honestly, it's really difficult to write this post, I guess there's always someone out there who'll interpret it wrong and think I enjoy being chronically ill. But for those who might think that. No, I do NOT enjoy it, not for a second! I've just decided to have a generally positive view on life, and wanting all my friends who read this post to know how much I appreciate that our paths met, even though I wish the reason of our paths meeting having been a better reason than a chronic condition. 

To all my friends: I'm always here for you and all ears! And I will cross oceans for you should the need arise! 

How a Panthera wheelchair changed my life

I mentioned in my blog post yesterday that I've now got a wheelchair, and it's not just any wheelchair but a Panthera S2 wheelchair which is light, very easy to propel, easy to pop a wheelie with and the S2 wheelchair I have is customized just for me according to my measurements and needs. I've had my wheelchair for over a week now and it's already feeling like a part of me!

I know a lot of people who aren't paralyzed see a wheelchair as a failure, and they do all they can to avoid one, and I can from my own experience now say that getting a wheelchair is not a failure and absolutely nothing to be afraid of!
If you live with a debilitating condition such as EDS, that affects your ability to walk and stand, a wheelchair can really change your life to the better the same moment you sit in the chair for the first time.
For several months now, getting out has been far from easy, many weeks I only managed to get out maybe 2-3 times in a whole week due to being in too much pain to begin with, or being in too much pain after coming back home. All my excursions outside had to be planned ahead of time and things I should have been looking forwards to often became something to worry about and hoping that my body would behave on the day of the event.
I wanted to go out more, I felt like a prisoner at home but the icy roads and aching body kept me indoors more than I'd like.

Last Monday I got my Panthera S2 wheelchair, and all of a sudden, I got my life back! I sit well in the wheelchair so I can sit for a longer period of time than I can manage on a regular chair, not needing to stand up as much has lessened the pain in my lower back and SI joints and letting my legs rest outdoors makes me walk better and with less pain when I'm at home. Using the wheelchair when I'm out of town has also improved my physical ability to drive a car thanks to being in less pain when I get into the drivers seat.
I also find that self propelling the wheelchair puts less strain on my shoulders, elbows, wrists and hands than walking with a cane or crutches does, and that's just an added bonus. I can now get outside whenever I feel like it and cover a greater distance than I can walk, much faster than I can walk and feeling a lot less achy and fatigued than after walking. I no longer need to take the car to go to places within my town, I take the wheelchair which means I both get exercise and save gas.
I'm active again, more so than I've managed to be in several months. I'm outside every day now, either for an errand, or just take a roll around in town for the fresh air and exercise. My arms are getting stronger, something that will hopefully help my shoulders stay in place better in the long run and the wheelchair also helps me with my balance when practicing wheelies or handling curbs outside. I'm already feeling the anti tip wheels are in the way, but will use them for a while longer until I know exactly what movements I can do without tipping backwards, it hardly ever happens but better safe than sorry!

I went to a travel and tourism fair in Gothenburg this past Saturday and I drove both ways, I couldn't have done that without having my wheelchair to get around at the fair. In the evening I went to a concert in another town, and thanks to having the wheelchair at the fair I managed both the fair and the concert and all the driving it involved to go there and back.

Some says getting a wheelchair makes you lazy. I'd say that's not true! For me at least, using the wheelchair outside is saving my back and legs for indoor things such as cooking and housework and it is enabling me to be more active, social and take part in more activities and I'm even going to look into if there's any handicap sports in my area where I can meet others living with a disability and maybe try some light sports like sitting table tennis, all to be more social and active in ways that I am able to. I can not keep up with fully able bodied people all the time, they're too fast paced and high intensity and they don't always understand what it's like to live with a disability, be it a disability from an injury or a condition.

Now I'm looking forwards to another fair in Gothenburg which is in April, a fair for people living with a disability and people who work with the various equipment used for making life easier. Live and function is the name of the fair if directly translating it to English and I'm literally bouncing with excitement to go there!

The decision to request a wheelchair wasn't easy to make, but it is by far the best decision I've made this far in the management of my EDS. A wheelchair isn't a cure, but it has taken away some of the dis out of disability, leaving me with more ability!

My wheelchair has really changed my life, and my experience as a part time wheelchair user is only positive!

I feel Chronically Awesome!

If you live with a chronic condition or know someone who does, check out www.chronicallyawesome.org