Overcoming Fear of Wheelchairs (and assistive devices)

I cannot tell you how many times when I went to Walmart or Walgreens I would walk towards where they kept the canes to see about getting one only to walk right past the aisle or make a mad dash (shuffling dash) to the doors. It was the same way when I began wearing braces not just because I injured a joint but to keep from injuring them, I was a hairstylist for 10 years, I was suppose to be an image of health and fashion, I felt like a complete goof wearing ankle, knee, and wrist braces! I wanted to puke every time I have had to add on some adaptive or assistive device to my lifestyle but the wheel chair is the worst thus far and for many I talk to it is for them too.

This post is for those trying to overcome fear of using a wheelchair, cane, walker etc because you know you need one but you just can’t pull your courage together enough to do it. I thought if I can still stand up and walk there is no way I need a wheel chair! I’m just going to deal with it, I will just go grocery shopping and 10 minutes be draped over the cart trying not to throw up because of the pain. Then I will get home, unload everything, and fall on the bed and let the grocery’s sit there for several hours, yeah even the meat!

For over a year I have talked to my husband about maybe using a chair when I need it, and during that year I never used one even though I really needed to and ended up isolating myself from activities because I refused to use one. I felt if I use a wheelchair I am giving up. I am letting my illness beat me. This can not be further from the truth!

There are people who have no option to use a wheelchair like parapalegia and even though it is hard to come to grips with any serious and life altering illness the decision for a chair for them is a no brainer. With Ehlers-Danlos, POTS, Chiari, CCI, Fibromylgia it is much trickier to make this decision but the key in deciding if you need one is would it benefit you?

Would it…..

Decrease your pain? Help an injury heal? Give you a social life again? Make it mentally and physically more enjoyable and comfortable to run errands or do chores?

Someone said maybe it was another blog I read but the one ice breaker question in deciding you need a wheelchair is are you avoiding things? Are you avoiding social outings, errand running, chores? Yes? Then a wheelchair is an option for you and will be a beneficial to your life.

By now I knew it would be beneficial, especially for my husbands sanity as he had to hear the sobs of despair at my inability to get over my fear of using one. So one day as we walked into our local Walmart I whispered to my husband,”Okay, I’m going to get one,” and I genuinely felt determined to do so. Yet as I approached the chairs my heart started pounding and sweat poured from my brow and I scuttled quickly past them putting in my mind, I need dog treats for Buddha, like now! 

I knew I had left my poor husband and kids in my dust and I could of pictured my husband standing there looking back and fourth at me and the scooters but I kept on walking not looking behind me and then I saw something coming up beside me quickly. I turned and it was my husband on a scooter,”Need a ride sexy?” He said. I took a deep breathe, smiled and sighed,”Yes, I do.”

 

My biggest dilemma, the crux of my anxiety was pride and fear (fear also ties into pride….you’ll see). Here are lies we tell ourselves:

• What if so and so sees me after they saw me working in the garden, they’ll think I’m faking
• I am young or look healthy they’ll think I am faking it
• People will think I am lazy (or if overweight they will think I am because I am lazy and use a wheelchair)
• My friends and family will think I am just over exaggerating or wanting sympathy
• I am giving up on life by using a wheelchair
• My doctor didn’t order me to use one I don’t need one
• Everyone (even doctors) say if I use a wheelchair my muscles will atrophy

The last two can be a bit prickly since opinions and medical experts have a lot to say about it but circle back with me to the beginning; are you avoiding activities? Using a chair as needed will not destroy your health or what health you have left! I have found I have become more active by using a chair. Because I used a wheelchair to go shopping I can come home and still be able to do things instead of lay in bed the rest of the day because I can’t walk. Or I can go out with my family and not be in bed for the next week because I cannot move.

The most important point too I want to make with those specifically with EDS is if you do have issues walking with joint dislocations (as I seriously do) using a chair for any excessive walking will help prevent damage and injury. Also, if you have recently injured yourself in my experience keeping weight off of the injured joint helps healing. Most of us hurt ourselves so often we will roll an ankle put a brace on and keep tromping on it. Where a healthy person who twists there ankle, goes to doctor, gets it wrapped and uses a crutch to keep the weight off of so it can heal. I know it happens so often it gets so sickening to have to baby every joint injury but believe me in the long run it pays off. Our only treatment is prevention!

The last point is deciding to use a chair does in no way mean your putting yourself in one for the rest of your life! It is simply an assistive device that helps injuries heal, prevents injuries, decreases pain, and keeps our activity levels as close to normal as possible.

 

I hope this post has helped you in some way, you are worth taking care of. Do what is right for you not what others think is right for you!

Update on Life

I have not posted too much personal updates and I feel I should. I also don’t post very regularly which I also feel I should. I know many who have rare disorders/illnesses surf the web endlessly researching about their illness because we just have to. Outsiders think we may just be hypochondriacs endlessly worried about our health and what that strange new itchy rash is on our arm but it’s not like that at all. We search for answers our doctors cannot give us. We search for new research being done, treatments others are using, articles that medical researches have written, and after all that we still feel there has to be more. So we begin to search and sift through anything and everything that any ones written about our illness which includes blogs and articles those who have the medical issues we do. It is comforting to read others health journeys. The struggles, the victories, the failures, the accomplishments. It can be as simple as reading how in the midst of pain and uncertainty someone was able to color a picture with their toddler. For someone who is healthy that seems so small, a moment in our memory that slips away but for someone whose moments are spent suffering that one small interaction could be the only thing to hang on to. It can be a memory that keeps us from slipping into hopeless depression.

As for my health it is continuously going down the poop shoot. I spend most of my time in bed alternatively sitting up in a mound of pillows or laying down. My S-1 L-1 junction in my spine is swelling and pinching nerves so walking and bending cause it to spasm and I am unable to bear much weight on it. I use a wheelchair around the house which I have on a loaner from a church who loans out medical equipment (wanted to share that because it took me forever to figure out how to get one until I saved money….check with your local churches, they have tons of medical equipment!). I try to get up and around but I pay for it even after a few minutes. I also have Chiari and have had tons of pain/pressure in base of skull. I also suspect cranial instability which my Neuro suggested so this is also making it hard to be upright. The only relief I get is to lay down. Along with the pressure/pain come Neuro symptoms.

Gravity is EDSers worst enemy!

I’ve had a terrible time with doctors but both my appointments this week went fabulous! I met my pain management doctor and he was amazing. They have this new thing where they test your metabolism to see how your body metabolizes medication. Thank God he is upping my pain meds and he can put me on ones that work because of the test. So no more guinea pig testing. I am also getting two injections into the messed up area in my spine. They usually do three but he wants to see if there is improvement and if there is I will get the third one. I have so many different issues with my joints in every joint I have (except my elbows) it is going to take time to address it all.

My ankles are also a huge issue as the arches in my feet have collapsed and my ankles turn in as I walk which is quiet painful. I wear braces which used to help a lot. Now it does nothing. So I need to either see a podiatrist or an ortho. Hopefully just special in soles will help. I get so overwhelmed with doctor appointments because I have pages of issues and I have to pick only a few to present to my doctor.

My last visit two visits were awful as I’ve asked to get a referral to a Neurosurgeon for my back issues particularly my neck (stenosis, degeneration, instability). I received my MRI results back and he looked over them quickly and said there was nothing that needed a surgeons attention. I have yet to get my previous medical records transferred to his office as I was scheduled for cervical fusion March 4th of 2014 but at my pre-op appointment the surgeon went over the EDS and since I had not had a proper diagnoses he wanted to cancel it until I received one. Which was the best thing to happen.

My current doctor brushed my urging to see a neurosurgeon off. I asked,”if there is no reason to see one why 6 months ago did they think it was necessary to do surgery on my neck?” His reasoning was,”some surgeons just like to cut people open, it’s all for the money.” I waited for 6 months doing physical therapy, getting nerve conduction tests, trying different at home things before they decided I truly needed it. Plus I was evaluated by two different Neuro’s not to mention the Neurological symptoms I have! AHHH! Sorry for that burst of anger, I’m better now.

My last appointment I had my notebook and I was ready to have it out with him and argue my case about seeing a Neuro. We chatted and he went over my other referrals and he threw in,”I also sent in a referral for Neurosurgery.”

“Cool.” I said but inside I danced like a little kid who got what they really really wanted.