I have EDS type 3, also known as HEDS or EDS-HT or EDS III or EDS hypermobility type. A dear child has many names as they say. I have probably mentioned my diagnose many times before in blog posts, but mention it again here as some reading this may not have read my blog before. Anyways, EDS III, which is what I have, is often considered the least severe type of EDS as far as mortality goes, but it's also known to be the most painful type of EDS and sadly we tend to either need enough painkillers to knock out an entire kindergarten just to get out of bed, or we're so super sensitive to medicines that it's close to impossible or even impossible to find a solution as far as pain medication goes. I belong to the group of EDS'ers who need strong, narcotic painkillers to function somewhat in my daily life, and I'm fortunate enough to not be completely resistant to the strong stuff like some with EDS may be.
Thought I'd make a list of the things that are most helpful to me in managing my daily life with EDS, a lot of it applies to any chronic condition, so here goes.
BendyJen's top 10 (that are all equally important, hence no numbers)
- Having a good doctor: It's so important to have a good doctor when you live with a chronic condition, someone who knows YOUR story and YOUR needs and who doesn't question your needs but do all (s)he can to help you in the best way possible.
- Pain management: Whether you take painkillers or not, that is YOUR decision, I have chosen to take painkillers even though I HATE it. I get relief from my painkillers and I have absolutely no side effects from them other than the positive side effect that I can actually function better when I'm in less pain.
- Support: Be it support from your family or friends or a chronically awesome online community, having people around you that understands, has your back and give you a push in the right direction when you struggle really means the world to someone living with EDS or another chronic condition.
- A pet: A pawesome furry friend can do so much for you! Few things are as soothing as the love and snuggles from a pet. Both cats and dogs can also alert you when something isn't right and a dog can be trained to become your certified service dog if you need to have one to manage your daily life. I have a cat and he knows when I'm not well, he won't leave my side and he's the most loving individual ever, and I love him more than words can describe. Without my cat, I wouldn't be where I am today.
- An occupational therapist: With EDS and many other conditions comes the fact that you are living with a disability and even the simplest of things as taking a shower or using the loo can become an issue. An occupational therapist can help you with things such as a shower chair, heightened toilet seat, work chair to use in the kitchen and various bits and pieces you may need to be more independent at home. I personally have the heightened toilet seat and a shower chair which really has made my life easier, along with making showering safer for me.
- Orthotics: With EDS, helping the joints to stay in place with bracing can be very helpful when you're in extra pain, or doing something that may lead to getting injured, or to let a joint rest for a while after a dislocation or partial dislocation. The only thing we should watch out with really is to become dependent on the orthotics, so it should be used in moderation only. I have a couple of rather impressive knee braces, wrist braces, Miami J Advanced neck collar, thumb braces and ring splints for my fingers to aid my function and/or relieve pain, but I only wear any of it as little as I possibly can and have been told by medical professionals I'm doing the right thing- listening to my body.
- Walking aid: If you have trouble walking, there's absolutely no shame in using a cane or crutch(es) to aid your walking if you feel it helps you and make you feel more secure when walking. Even young people can use a cane and they're available in really fancy colors and patterns these days! Even a walker can be helpful, though I could never get myself to use one for many reasons, I stuck with cane or crutches and still do when I walk.
- Wheelchair: If walking simply gets too tiring and/or painful, don't see a wheelchair as a failure! A wheelchair can really give you your life back and you don't have to be paralyzed to use one! Wheelchairs are available in many different models and from many brands, and there's one out there that will meet your needs, be it a manual or powerchair that you need, or why not a manual wheelchair with power assisted wheels? I have a Panthera S2 wheelchair since little more than a week now and my life has changed drastically for the better since I got it! I am in less pain in my ankles, knees, hips and lower back when I use my wheelchair outside of home. I can cover greater distances in the wheelchair than if I'm walking, and I can self propel a lot faster than I can walk, and it costs me less energy. In short, the wheelchair has made me active again and instead of being stuck at home too much, I now go out every day in the wheelchair and get exercise that way, and I look forward to events instead of feeling nervous about my walking ability and pain level on the day of the event.
- Talk to others: Knowing you're not alone with your condition and having somewhere to turn to when you need to ask something specific to the condition you live with means a lot. Join your local support group for your diagnose if you have one of those groups and/or the NGO for your condition, or join an online group for people with your diagnose. There's a myriad of Facebook groups that are diagnose specific where you can chat with others and make friends and find out that you're not alone in experiencing the symptoms and issues that you have. There's also Chronically Awesome which is a community for anyone living with any chronic condition, it's a great place to "meet" up with others fighting a chronic condition and you'll most likely find at least someone else having the same diagnose as you have. Suffering in silence doesn't help anyone, there's help and support out there!
- Accept: Accept your condition and disability and make the most of what ability you do have. Accepting that something is life long and maybe progressive isn't easy, but accepting it is a good start to living well with whatever your condition throws at you.
These are the things that helps me the most in managing my life with EDS, all of it equally as important. I take part in both diagnose specific and general support groups online, I have a very supportive family and friends and the most amazing cat you can imagine! Even though I have all the things I mention above, it doesn't mean that my life is a dance. I do struggle, and sometimes I struggle a lot, but by having the support and items that I need, I can live a better life. The item that helps my daily life the most has to be my wheelchair as it's enabling me to be a lot more independent, active, enables me to take part in things and makes me need the car a lot less. My wheelchair is both a part of my pain management and a mobility aid and for the time being at least, my shoulders, elbows, wrists and hands are strong enough to self propel. I do have issues in those joints as well, but my experience is that the wheelchair puts less strain on them than walking with a walking aid does, along with the fact that sitting in my custom adapted wheelchair lessens my lower back pain and makes my legs hurt less. I should probably write a whole blog post about my wheelchair soon, seeing it's past 4:30am in my part of the world now, that blog post won't be tonight.
Be well, and remember, you are not alone!
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