Holiday horror

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I have a somewhat strange family makeup. My mother, brother, and I are all mentally and physically ill in some way or another. My aunt and her family, on the other hand, are perfect. Health issues are minor and dealt with quickly and quietly. My grandparents like to pretend that all is well with all of us, and don’t like to be confronted with the ugly truths. 

I have had complex regional pain syndrome for just over a year now. I see my aunt and her family very rarely, only special occasions, and they don’t know what I’ve been going through. This Christmas is the first time they will be seeing me since my CRPS has taken a turn for the worse. I look like the hunchback of Notre Dame when I walk. 

I have a terrible, overwhelming shame when it comes to my movement. I hate how I walk. Walking causes terrible pain that I prefer not to deal with so I spend most time horizontal on the couch. I have started using my Walker around the house. 

This may all seem unrelated, but there is a method to my madness. My aunt lives in a huge house, has the perfect family, and is so alpha that she could make a lion cower. My uncle is more or less the same, a perfectionist. This huge house of theirs has beautiful hardwood floors and nice clean tile. They hate messes. And I’m supposed to cart myself over there and (pardon the term) but more or less gimp around their huge house and pray there is a padded seat for me to sit on for Christmas morning. 

I so badly want to take my wheelchair. My Walker. Heck I’d settle for my cane. It’s terrifying to think of ruining their floors and getting yelled at or made fun of. Scorned, stared at, given tons of terrible advice on how to cure myself. I am so afraid to go to what should be a happy family get together. 

I don’t want to inconvenience them. I don’t want to be a burden. These feelings of self resentment and shame are so pervasive it’s all I’ve thought about for the last two days. 

I know realistically that my family doesn’t mean to upset me. But even the smallest of jibes has been hurting. Even hearing the word “inconvenience” sends me into a downward spiral of depression and tears. My family can be compared to a pride of lions. They like to attack weakness and weed out the inferior. I am ashamed. 

My family are good people. My uncle, a police sergeant. My aunt works for the government. But they don’t understand how to deal with insecurities and disabilities. 

My family loves me. I will try my best to make it through this holiday season without crying. It’s so hard to feel so negatively about family. I love them dearly and wish I didn’t feel like this. I’m going to apply to my local pain clinic after the holidays, and maybe they can help me deal with these feelings of inadequacy. 

Hoping everyone has a wonderful holiday, no matter what holiday you celebrate! 

A new trend for acceptance

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I recently stumbled across something called “Cripple Punk” or “cpunk” for all the politically correct nut jobs. It’s a movement for the physically disabled, by the physically disabled. 

There is a whole mantra about it, and its easy to find, but the rules and things aren’t what I want to discuss. 

I have been (realistically) physically disabled for some time. I’d say since I applied for disability. That doesn’t mean I have accepted the label of “disabled”. I now use a wheelchair whenever I leave my house and am having a lot of trouble adjusting to the physical limitations placed on me by my disability. 

I try so hard to be a “good cripple”. The cripple that thanks everyone for unwanted advice. The cripple that smiles and thanks someone for randomly grabbing the wheelchair handles and pushing them. The cripple that is never exasperated or fed up with societies terrible attitude towards the disabled. 

The cripple punk movement is the antithesis of all that. It is about being bitter, and non conforming to how society views us. It’s about being yourself, unique, loud, proud, and not being thankful for your disability. 

I’ve heard that disabled people should be happy. They have overcome limitations and are inspirational. When I hear this, I get so mad. It isn’t fun being disabled. It isn’t cool to be in crippling pain, doing nothing because of fear, and needing help for simple tasks. I don’t have to be happy. 

I always feel the need to apologize for my disability and justify needing help or asking for assistance when I’m having a bad day. I apologize on the bus to everyone, saying “sorry you had to wait, I’m new to this”. None of this has helped my self esteem or acceptance. 

But cripple punk does. I’m not necessarily punk. I don’t relate to that as much as I would have five or ten years ago. But knowing that there are people who support being unhappy, being bitter, or angry at the world, makes me feel better. Knowing I’m not alone and that there is a huge movement among the disabled that breaks the rules, empowers us through something as amazing as the Internet is amazing. It is like a weight has been lifted off my chest. I can breathe again. 

My life has been forever altered. Even if by some miracle I gain my mobility back, it has altered my perspective and thoughts on so many things. I don’t have to be happy about this. I can be angry, and its alright. I’m not alone. 

Accepting doesn’t mean being happy about it. It doesn’t mean plastering a smile on my face and being as humble as possible. It means getting through life with as little pain as possible. (to me anyways) and if that means being grouchy and not apologizing for existing, then so be it. 

Grab my chair handles, I dare you. 

Accessible, yeah right

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I was assessed for a permanent wheelchair merely days ago, and have been using a rental chair for maybe two weeks. I live in Ottawa, Canada, and we have recently gotten almost a foot of snow. My buildings (thank goodness) hire private contractors to plough and have employees onsite to clear and salt the sidewalks. The rest of the city is not so good. 

As a new wheelchair user, I finally understand the misery of using a wheelchair in Canadian winter. Ottawa is touted as having the best transit system in Canada. But with the construction of the new LRT system, many routes are being cut, prices are being raised, and buses are in a higher state of disrepair than I have seen in a long time. 

Buses in Ottawa are able to kneel, they lower with hydraulics to be level with curbs to aid in assisting strollers, mobility devices, and people who just can’t manage the drop to the curb. They also have fold out ramps to load wheelchairs and especially large strollers. 

They always have some problems, but it seems like they are getting worse. There is nothing quite as horrible as having every other passenger attempting to board the bus getting angry at you because the ramp won’t lower fast enough. The ramps work on a motor, and so far all but two buses I’ve ridden on have had faulty, shorting, or damaged motors that can’t lift the weight of the ramp. 

The ramp will lift several inches, stop, and then fall several inches as it attempts to unfold. It can take a couple minutes for the ramp to unfold, humiliating those using the ramp, and pissing off a lot of paying customers. 

This whole fiasco can be solved quite easilly, as I have seen. All the operator has to do is get out of the chair and pull the handle to unfold the ramp manually. It’s not difficult. The handle is fabric and lays under the ramp to be used in emergency, such as the ramp not coming back up into the bus. 

Another issue is the folding seats that lift up to allow space for wheelchairs and strollers. They have a grab bar with a signal button that is meant solely for wheelchairs. This button is often neglected, or mashed by children to the point of no longer working. The seat with the grab bar is also not anchored properly, and is so unstable wheelchair users are forced to over reach and hold the back of the seat for dear life. 

Luckily for me, I have one leg that works, and can hold myself stable by pushing back with my leg so my chair rests against the padded side rest. These side rests are used to stop people in the seats from flying forward in event of a crash or sudden stop. They are often full of holes, greasy, covered in filth, and horribly frayed. 

The floor of the buses are covered in salt and water, incredibly slippery, and offer absolutely no traction for manual wheelchairs. So while your breaking your arm trying to hold on, you’re sliding all over the floor and bumping into other passengers. 

The transit system in Ottawa is hailed as a role model for other cities, called great and receives all kinds of praise. But shortcuts are taken that diminish the effectiveness of the transport for literally no one except the disabled. 

I know this is not done on purpose, it’s not discriminatory or anything. But winter is the worst time of year for those with mobility issues, leading many people to not leave their homes for many weeks. Does this not warrant a bit of extra care? Would it be so difficult to repair ramps, tighten the movable seats, and install rubber mats? “It sort of works” is not acceptable in minus thirty degree weather. 

Sweet freedom! 

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Last week I decided to rent a wheelchair from a nearby hospital instead of waiting for funding to come through to buy my own. The initial experience was terrifying. 

I had never used a wheelchair before. I had no experience when it came to pushing myself or getting around at all. I took the bus to the hospital and after some rental issues I was finally allowed to rent one. So I sat in it and immediately almost ran into someone. I managed to make it to the bus stop by cheating (I used my foot to help move along) and the bus came shortly after. I failed completely at getting up the bus ramp and had to stand up and hop up the ramp while pushing the chair. It was totally embarrassing. 

But as scary as it was, I decided to take it for a spin while grocery shopping. I shoved it into the back of my roommate’s tiny car, the trunk had some car parts in it, and expected a miserable and painful experience. I was wrong. 

I had so much fun! I did some research online and found the proper way to push myself, and it made a huge difference. I was spinning around and zipping along, finally able to keep up with my roommate. I actually enjoyed an outing for the first time in more than six months, and it was so strange to come home and have no pain in my leg and foot. 

The experience was so freeing, I was so incredibly happy when I got home I called everyone and told them how much fun I had. To a normal person it must seem so silly to say that something as “confining” as a wheelchair was freeing, but I had so little pain, and could move faster and in a more agile manner. I haven’t been able to pivot on my ankle in so long, but in the chair I can spin around in a circle so easilly! 

If anyone is considering getting a wheelchair because of mobility issues, I highly recommend one. It was incredible and I have adapted so quickly that I was actually sad to start walking again. It’s incredible how easy it is to get used to, and how truly freeing it is to use one after months of limping and extreme pain. 

“The System” 

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Anyone living on social assistance or disability knows how degrading and disgusting the system is.  It’s almost like it was made to shame anyone who needs help. In  Canada, many people have this glorified view of life on disability. “Oh you don’t have to work? You’re so lucky getting to sit at home and do what you want.” If I can lift the veil from just one person’s eyes I will be satisfied. 

I suffer from chronic pain,  anxiety, and mobility issues that are new to me. I was recently prescribed a wheelchair by my doctor to help relieve the pain I experience when walking. I had no idea how to go about getting it covered (my disability is supposed to cover medical devices) so I contacted my worker and asked how to start the process. 

She had no idea what to do. She tried to google what to do and ended up asking a colleague. She has not known the answer to a single question I have asked. She is untrained and knows nothing but knowledge that can be gleaned off of the government of Canada websites. In the end I called the company I wish to supply my wheelchair and got more information from them. This was almost four weeks ago. 

In Canada there is provincial disability. Every province has its own system for the disabled. In Ontario it’s called the Ontario disability support program,  or Odsp. I applied for coverage to see an occupational therapist, who is the only person  who can apply to have your device fully covered, three and  a half weeks ago. I called my worker and she informed me that Odsp requires ten to fifteen business days to process mail. How is waiting three weeks just to hear they received your request “fair”. 

I truly cannot do even basic errands. I can barely leave my house because I am afraid of the pain it will cause. Yet because I am on social assistance I need to wait as long as four or five months to even know if I will qualify for coverage. It takes about a month to know if you will see the occupational therapist. Another week or two to see them. Then you discuss what you need and they have to find a chair or even a company that will suit your needs. Odsp must then be sent a quote, which takes up to three weeks to even reach your worker. If your worker agrees the quote is reasonable they then send it to the ADP, or assistive devices program. They then deliberate for an average of four to six weeks (it can be longer) until they reach a decision. Then they have to contact the caseworker, who contacts the company, and they can then start the process of sending the chair. 

So to get medically necessary equipment to the people who need it most takes months. If I could pay for one I would. For now I have to rent one. 

On Odsp you also cannot marry a working individual. If you do,  you lose most or all of your money and become a burden for as long as you are married. Your spouse’s earnings are deducted from your check dollar for dollar until you receive no money. After that happens you have to fight to keep your drug,  dental,  and eyewear coverage. You must send in every check your spouse receives every month so they can make sure they don’t give you excess money. If they do make a mistake and pay money you aren’t supposed to get,  they don’t inform you,  they simply request that you pay them every penny back. (whenever they finally find out they did pay you aka up to five years later when they review all the files)

You cannot have more than five thousand dollars in the bank at any time. And until January of 2017, even child support is taken,  being counted as income. 

If you medically require a special diet, such as allergies or intolerances,  they base it on your need. I know that if you have celiac disease you qualify for a measley fifty extra dollars to pay for all gluten free products. Twenty dollars if you are lactose intolerant. A single bag of lactose free milk is over ten dollars, and a bag of gluten free bread is almost eight. 

The arguments I hear are,  “People on disability don’t deserve as much as a regular person, they don’t work so why should they need a cellphone or internet?” “People on disability should just get a job,  stop being lazy.” “They are all junkies anyways.” I make less than a full time minimum wage worker,  and my full time,  24/7 job is suffering not of my own making. I didn’t choose to be disabled. And according to the nay-sayers, even if I was able to work,  I couldn’t apply for a job because I can’t afford internet. (I can because I have an amazing roommate and very little costs outside of food, rent, phone, and internet) Living on Odsp puts you at something like 33% below the poverty line. 

The point I am trying to make, is why do the disabled deserve to suffer even more than they already are? Life is hard enough without having to sacrifice food for your heating bill. So please stop judging everyone unable to work. Someday someone you love or even yourself may require to live like they do. 

It’s never the answer

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I am the first to admit that I have thought about suicide. Not in quite some time,  but as a teenager I suffered a lot of bullying and from severe depression, so I know how tempting it can be. But it is never the answer. 

Crps is nicknamed “the suicide disease” because of the intense, unrelenting pain and the lack of understanding and treatment. I haven’t personally been touched by suicide, but I know people who have attempted, and people I know have been affected by it, so I wanted to offer support for anyone thinking of it. 

The hole left in a family by suicide is impossible to fill. Family and friends blame themselves in a never ending cycle of vicious pain, self hatred,  and regret. At least if a family member dies from cancer you can place your feelings on cancer instead of blaming yourself and everyone around you for “not being able to see it”. 

Often when someone is seriously contemplating ending their life they show no or very few outward signs. They won’t broadcast how they feel, they actually seem to be doing better most of the time. That’s why it hurts so much… People who decide on suicide and have been contemplating it for some time tend to feel at peace with their decision. 

Times may seem bad, things may be hard and feel hopeless. But I cannot express strongly enough that things will get better. Reaching out to someone you trust can be the difference between a lifetime of  familial suffering and hope. Because there is always hope. 

Getting help, talking about it,  and relieving the stigma around suicide are so important. Attempting suicide doesn’t make you weak, it doesn’t make you stupid, and it doesn’t make God or a higher power hate you or condemn you. It only means that you were strong enough to survive,  and that you have the power to get better. A second chance is a powerful thing. 

If you think someone you know is suicidal, do not try and force them to get help. Talk to them. Remind them of the things they have to live for. Establish that they can trust you, and do not break that trust. Remember that you can’t force someone to get better, they have to want it. 

If you are contemplating suicide for any reason, please,  get help. Call a local suicide prevention hotline,  inform your doctor, tell a friend or loved one that you need help. If the desire to die is so strong you feel like you can’t stop yourself, please call police or your emergency services. Your loved ones will thank you for it. 

When faced with a difficult decision

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My friend is 31 weeks pregnant. She is in contact with CAS and they have asked to meet with friends and family to get a better understanding of her situation. I have been asked to attend. I am horribly torn and disgusted that they would employ such destructive tactics to get what they want. 

Let’s be clear, I think my friend would make a terrible parent. Suffering from many psychological and physical illnesses she is unfit to be labelled as an adult, let alone a mother. This does not mean that I do not love her dearly or care for her very much. She is my best friend, and while she has many faults, I do too, and we look past them. 

I worry for both her safety and that of her child. And for that reason I will tell CAS the truth. It may ruin our friendship, and it will devastate me,  and her,  if she finds out. But I grew up in a neglectful,  disgustingly dirty household and I always wished someone would have saved me. I will save this child the suffering I went through. 

This is the hardest decision I have ever had to make. It may break my heart. But I will do what is right,  and if that makes me a bad person or friend then so be it. 

I didn’t ask for your advice

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One of the most annoying things about CRPS is people trying to tell you what is best. I have been told over and over, by everyone I know, “move it or lose it”. And while this is true to some degree, overdoing  things with CRPS can actually make it worse. 

This stems from the general lack of knowledge surrounding CRPS. Nobody in my family has bothered to research it,  so they just spout off whatever they have been told to do for simple injuries or their own problems. My mother told me to put ice on it. That is a huge CRPS no-no. My step father says “I couldn’t use my hand after my stroke, but I got it back” yes,  you got it back because your brain lost the ability to use it,  not because your muscle control centre has fried itself. And I can’t very well play Xbox with my ankle. My brother says “push yourself,  push yourself” which is counter intuitive when dealing with dystonia. Walking on my crunched up, sideways foot is not in any way helpful in getting rid of pain. 

(standing on my foot) 

But “move it or lose it” is my biggest pet peeve. People don’t seem to understand that my muscles are wasting even though I walk my dog, go for walks, have weekly outings to the mall,  and have generally continued life as normal for as long as possible. My friend with CRPS was able to mostly overcome the wasting of her legs by getting corrective surgery on both ankles, a step that I do not yet qualify for. 

I currently walk on the pad of my pinky toe, and the bones have started grinding together. So walking is extremely painful, even without the swelling, pain,  and contortions of my foot. I wear a semi usefully ankle brace to stop my ankle from rolling and breaking, but it does nothing to correct the posture of my foot and ankle. So no, simply using my leg won’t fix it. 

People also assume that this will go away. They tell me “it can’t be that bad”  and “you’ll get better if you try hard enough”. There is no cure for CRPS. It has a chance to go into remission, but then you have a much higher chance of it coming back from something as simple as stubbing your toe. The chances of remission drop substantially after six months. 

It bothers me that no one I know will do any kind of research. They remain ignorant and hurt my feelings with their insensitive comments. Having to explain over and over that it won’t go away and that there are no affordable treatments breaks my heart. 

Introducing Charlie the dachshund! 

This is my baby Charlie. He keeps me company, keeps me moving, and is a little pain in the butt. I thought I’d introduce him to the world,  even though I doubt I’ll have many,  if any followers. 

I got Charlie from a backyard breeder when he was ten weeks old. He was the last puppy to go. He had no contact with his father (who was injured just after he was born and had to be kept calm in his crate) and was taken from his mother as soon as he was weaned. The owners also didn’t want to get attached,  so he had almost no human contact. 

When we walked into the blocked off room he was in, he crawled away from us on his belly, into a crate full of blankets. There was poop on the floor and he was obviously not even in the beginning stages of potty training. He was terrified and his tail was between his legs. It was apparent that something was very wrong. 

Charlie has suffered the consequences of his breeder’s cruelty since we got him over a year and a half ago. He barks at every sounds,  hates everyone but family, and has severe separation anxiety. We can’t crate train him because he tries so hard to escape. He’s cut up his nose and chipped teeth trying to get out. He still isn’t 100% potty trained. 

And I wouldn’t change him for the world. He’s a furry little angel and he’s as messed up as me. I love him. 

It bothers me when… 

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Yesterday I was doing laundry for the first time in my new building. My roommate and I moved to an accessible building because I’m getting a wheelchair, so I expected people to have some tact when it comes to disabilities. 

I have to take my Walker to carry the load of laundry. When I was getting into the elevator, a gentleman had the gall to not only point out my obvious issues walking, but to also suggest that I was an idiot. “your foot looks broken why aren’t you in the hospital?” Now being completely unused to people talking about the horror that is my foot, I sheepishly mumbled something along the lines of “I have a chronic condition”. 

I have never been so ashamed and humiliated. I wanted to start crying right there. I’ve been trying to tell myself that it doesn’t look that bad, it’s not that obvious, nobody is staring. I don’t want to go out anymore. I feel terrible about how it looks. The muscles in my calf are wasting too, so one leg is smaller than the other, and I will no longer be doing laundry in anything but full length pants. 

Would you walk up to a person in a wheelchair and start asking “what’s wrong with your legs?” No. So why is a Walker any different? Apparently Canadians are far more ignorant than I have previously thought. 

What I obviously need to do is get one of those wearable signs,  and write “don’t ask” on it and wear it whenever I go out.