Environmental Impact of Disability

I read a really interesting post by lilwatchergirl called “It’s not easy being green and disabled” and I have been thinking about it ever since.

Ever since I became very sick over 18months ago, it has been concerning me how much impact my life now has on the environment.  Previously I would walk as much as possible instead of driving, take public transport into the city, only have the heater on when it was REALLY cold (That’s what a jumper’s for…) and try not to use too many appliances unnecessarily.

Now I have the heater on most of winter and air conditioner on if the temperature is above 30 degrees… If I get too hot or cold my symptoms increase to the point of either being very painful and even dangerous.  For example in the heat I can’t even stand up without falling over.

Because I am at home on my own all day I have the television or stereo on all the time and also the computer often – even though I’m not always watching it it makes me feel less alone.  If I go to the corner store I have to have my partner drive me down as I can’t walk that far or drive myself.

So I do the small things that I can do – open all blinds so I only use the lights I need to, by default I don’t use the car a lot as I get very motion sick lately, and don’t have the energy to be out for very long.

I eat organic food as much as possible, no processed foods – we make all our food from scratch (when I say ‘we’ I mean Mick as he does all the cooking) and we buy all our vegetables from a local veggie shop which means it is locally grown, not driven or flown a million miles!  That has to save a lot of petrol and chemicals and factory consequences…

It is a bit challenge for me not to blame myself and feel guilty for the use of heaters, TV, etc but I try and remember that it is not because of pure indulgence or laziness and at least I am evaluating whether or not I need these things.

I am glad this topic has been brought up because it is a challenge and one which is often overlooked by society when it comes to living with a disability or illness.

 

A Few Good Women

I have come in contact with some awesome women over the last few weeks, who were not only professionally brilliant, but also very respectful. A great change from the general treatment I encounter with the medical profession.

A woman from the local council’s Disability Unit came to visit a week ago, to assess my eligibility and needs for support. They are very restricted by policies (Due to lack of resources, anyone who has an “able bodied” person in the house is ineligible for in home support in terms of cleaning etc – a whole post in itself)

However, this woman was very supportive and understanding of the challenges faced by myself and my partner who works full time as well as being my sole carer – A very stressful and exhausting position. She acknowledged the need for me to have social contact as I am alone all week, and quickly set about arranging for a respite worker to visit me for an hour a week. The most amazing thing was the amount of time she spent to speak to me about how we are coping.

The second amazing woman is the new dentist I have been seeing. The prospect of a bunch of fillings and cleans was very daunting for me, as these experiences are one hazard after another particularly with the Multiple Chemical Sensitivities. She listened to my concerns, discussed the options and we decided to try as much work as we can without anaesthetic and she replaced the normal mouthwash with distilled water.

Last but not at all least, our Health Insurance Fund has a fantastic program called the Total Health Program. Health Professionals keep touch with members who have chronic health conditions, and help set goals and manage their recovery. The woman who speaks to me is incredible! She is one of the most knowledgeable people I know about CFS, is understanding and supportive as well as having a lot of information and resources to support both myself and my partner.

She also really helps by reminding me of the progress and achievements I have made over time – something that is so very easy to forget when coping with illness.

It’s like a breath of fresh air!!

 

Have You Ever?

Have you ever felt so alone you wonder if you’re real?

Have you ever met someone who is everything you wish you were and can turn your life upside down without knowing it?

Have you ever felt like someone just can’t understand you no matter what you say or how you say it?

Have you ever wondered where all your friends went?

Have you ever wondered if you are loosing your mind?

Have you ever felt so worthless you don’t feel like getting up?

Have you ever felt so gross you feel as though no one could love you?

Have you ever wondered what you are doing here?

Have you ever wished you had more control of your life?

Have you ever wished you could just stop feeling what you are feeling?

Have you ever prayed for more strength or understanding?

What did you do?

 

Should know better

Well I have to say that I should know better!

Yesterday a Community Physiotherapist came to visit as I had requested a mobility assessment.  I have no mobility aids, and spend most of my day leaning on whatever furniture I am walking past – or Mick.  I really just wanted some advice on what type of aid would be best and where to get them from.

She launched into a lecture about how it is important to do lots of exercises every day to make sure my muscles don’t get weak.  When I told her that my Osteopath had given me some gentle exercises, she told me this would not be enough.  She then asked me to walk up and down the room for a minute then started talking to me.  After one time my legs started aching and got really heavy.  By the time I had done it again I could hardly lift my leg – sat down after that even though she didn’t want me to.

I am sick of feeling as though I am slack because someone has no idea about the condition… in fact she condescendingly told me that exercising unfit muscles will always hurt because they are not used to it.  This to someone who trained to do a small triathlon in 6 months – I know about normal muscle training!

Anyway, end result is that this morning I laid in bed for 2 hours unable to get up… hardly able to move.  My poor baby Deapha (Just have to add she is a dog – not neglecting a child) was wining for an hour because she wanted to go and lie in the sun.  I couldn’t let her out – finally she gave up and joined me on the bed.

Finally got up but straight back to bed with my breakfast and laptop- only good thing was she left a walking stick for me to try.

Not a good morning…

 

Drowning

It’s funny looking at that post, because lately I feel as though I am drowning – far from climbing mountains.

The sense of helplessness is incredible, particularly for someone who is used to being so independent and capable. The cleaner couldn’t come last week, and so I found myself sitting in a filthy house and unable to do anything about it. Having a dog and three cats, this is particularly a problem with fur everywhere!

Mick doing the work is just out of the question, as he is already struggling to keep up with full time work, all the cooking, shopping and taking care of me.

I decided to sweep the lounge room floor myself, but had to stop halfway through with my back aching like it hasn’t in ages, difficulty breathing, pounding heart and head and dizziness (I had managed to do about 3 square metres).  The most frustrating thing is that now I know I am going to pay for this for at least a week!

Sometimes I feel so alone and useless!

 

Climbing mountains

When selecting a picture to put at the top of this page, I was scrolling through the photos Mick (my fiance) and I took during our camping trip in the Grampians, and I was reminded about the common emotional journey undertaken while Mountain Climbing.

Looking at the peak from the ground, the emotional reaction is conflicting… It is a beautiful sight, and the thought of being up there, inspirational. However, also quite daunting. The ascent starts and we are chatting away about whatever pops into our heads.

After a while, I start breathing faster, and can feel my heart pounding in my chest. The spring in my steps becomes a bit less bouncy. Eventually I really need to stop, have a drink and catch my breath. From there on in the climb becomes harder. We hardly talk because I need all my breath, my focus is on my feet or the path ahead as I loose some of my agility. I start to feel as though i can’t go on any further and stop to catch my breath before calling it a day and going back down.

As I sit down, I notice the view. All the beauty I had been ignoring in order to keep my feet on the ground. It is spectacular! Like no other experience in the world, it is as though a new world has unfolded while I was climbing. Suddenly I remember why I decided to put myself through this, and I am filled with a new motivation to keep going. This cycle continues, as each time one of us runs out of steam we stop, comment on the view and congradulate ourselves for still being alive :-p

As I was looking through the pictures (each one taken on one of the breaks along the way) I realised that is very much how I feel living with a chronic illness. At first I was very positive that with rest it would soon go away and therefore enjoyed the time on my own doing nothing. Later down the track however, I often feel as though I push myself through the days, wondering if I can find the strengh to go on. Every now and then, mostly when I am at my lowest, I find some inspiration to keep going. Sometimes it is my animals being funny, sometimes a visit from a family member or a reminder that others deal with much steeper mountains every day.

Whatever it is, I thank the Universe and remember how important it is to lift your head once in a while. Otherwise it is so easy to forget the benefits of this journey!