Wednesday, 23 October 2013

Lets talk disability, mine to be precise.

For as long as I can remember I've been easily able to count my blessings in the darkest of times through life, I learned that to be able to do this keeps challenges in perspective, no matter how hard they are. It's also healthy in many other ways to find a positive in a tough time, for one it keeps insanity at bay.

I don't mind admitting that I still have tough times accepting my arthritis, how quickly its set in and all the ways it has robbed me of independance. Some days all I want to do is cry with sheer frustration and pain and while now and again I do give in to it, I do pick myself up and carry on. The alternative isn't an option and lets face it, it's not a condition that is terminal, it's just never going to go away so its a life long adjustment process.

In 7 months I've gone from limping with knee pain, swelling and weakness to hold myself to being in a wheelchair. Lets talk about this a minute...

Getting crutches was the difference between walking from the kitchen to the living room and not walking from the kitchen to the living room. they are adjoining rooms and a clear run {strategically placed furniture is essential for anyone with mobility issues}. When the kids are out and you want a sandwich or to put a wash load on its no longer a five minute job, on a good day it can take a good 5/6 minutes. On a bad day it can take anything around 10 minutes. Then theres the arthritis in my hands.... see where this is going?

Using the crutches still puts all the weight to my knees as I raise to stand and when I stand/walk, that weight crushes the joints and causes more pain, swelling and discomfort. Often I can't straighten my legs or walk from my heal to the front of my foot, instead I walk like I've *messed* myself and on tip toe. Not a pretty site I can assure you!

Getting upstairs doesn't happen every night, some nights I have to position myself on my 2 seater and make do with it. Other nights I alternate between crawling up the stairs and using a crutch one step at a time, either way my feel are positioned at the far side of each step as the bend movement is so taught and painful it's just not going to happen.

Once sitting I fidget {which is a good thing for anyone} till I can find some relief, then a few minutes later I shuffle again. Somehow I don't see the smaller things anymore, they've just become part of how things are done now. I have an agreement with my friends and medical care team to just walk in when they come visit or give care. The difference here is usually its only friends and family that just walk in {its how I like my home to be} but it's ok, getting up and down is no fun. Charley gets friends knock for him almost every 15/20 minutes because he isn't one for going out to play in the cold so he will often be the doorman! :) When I want to work on something other than the computer or crochet etc I have two choices, do it from my sofa or become a contortionist at the dining table. The latter doesn't work so relying on the former can often mean some things cant be done, ie sewing with the machine or cricut cutting. There is a way round this that I'm yet to find though.

So what's it like going out?

This is, until now a no-goer. Walking the 12' from my front door to the car is painful. Then I have the issue of getting in the car and as for driving that has become so painful I daren't drive more than I really have to as within a minute I am on the ceiling with pain from changing gear, sometimes just the seat is putting a pressure on the back of my legs so much it feels like they are being suffocated on the inside. Needless to say the only driving I was doing was to get Charley to and from school.

Life is very different from this time last year.

Then comes my friends Sharon and Jamie. While they were out this last weekend they saw a wheelchair and decided to get it for me! I was so very grateful to them because even though I'll need someone with me when I go somewhere. it really means that I can get in a car and go somewhere other than the school. To be pushed around Morrisons or The Range or round the local shopping centre will give me so much more freedom and less isolation I'm excited.

Going round Morrisons last night with the teen and the dude they couldn't do enough to help me but it was another world to me. As an able bodied person you think you know what it's like, trust me, it's nothing like what you imagine! I think I've always had a respect for disabled people but what I've never really understood is what it is they deal with on a minute-by-minute basis and the simple challenges they face. Those who don't give you enough space to manoeuvre be it sticks or chair, those that lean over you to get what they want is almost like you are invisible. For me it was humbling and i soon found a new respect for things I had no real clue over, a world I'm about to enter even if only on a part time basis.

Sitting in the wheelchair almost felt like I was giving up, my physio works while the fluid doesn't over ride my knees and take me down. This is currently what is happening. While I may never be able to walk much again, at the moment I know its a lot to do with the excess fluid that needs draining but I also know that the way the joints are grinding together fluid is something I'll always have to deal with. I'm getting to be ok with that.

My biggest thing is that my condition affects the kids as little as possible. I employ a cleaner twice a week, Kirsten still does her share of chores but no more than normal. She automatically looks out for me and assists me, she calls me speedy and makes robot noises when I'm trying to walk. She know the way to go forward is well balanced humour. Charley has his usual 3 chores a day, he always asks before he goes off onto xBox live if he can do anything for me and I know if I call on him to do something he is happy to do it. As I said, I'm trying to keep it to a minimum for them but so far I know it causes them both to nurture their caring side. We don't go on day trips anymore but that will be able to change now with the wheelchair. I'm looking forward to getting out and about with them again just as soon as I've changed my manual car to an automatic.

Life isn't over with osteo and rheumatoid arthritis, it just changes, challenges you and means the future you were planning on may never happen but you can find another one. I've lost a lot of my future dreams and goals, many things on my bucket list can never be done but thats ok, I can think up new things and work with what I can do because when all is said and done I am alive and I'm not going to die. For that I thank God for each and every day.

This is just the tip of the iceberg on a day in the life of me but I think the point is there.

So at this point in my life, I am stronger than ever, I am more focussed, happier, more determined and definitely the furthest away from submission than I've even been in my entire 45 years!

If you suffer from arthritis, I hope you are having a good day.... :)

Debs

ps. I've not got to the point of photos of my crutches/wheelchair but I will, after spending a stupid amount of money of a cool camera I know it's in the making!! hehehe
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