The 3 D's, DEPRESSION, DIFFICULTIES & DISCRIMINATION. I'm going through a rough patch at the moment and the 3 D's will explain what's happening.
I went to a friends cocktail 60th birthday party last Friday. When I wheeled in I instantly noticed how elegantly everyone was dressed, and how gorgeous the venue was. It was all so beautiful. Mum came along with me as were both invited, and we had a great time meeting and chatting to some very nice and interesting people. My friend looked stunning and I noticed how fabulous her posture was. We enjoyed ourselves however needed to leave at 9.30 pm because the maxi taxi(a special taxi that can take wheelchairs) was coming to pick us up, I was feeling lousy because of a rotten cold, and I need to be in bed around 10.15 pm - 10.45 pm. Sadly we missed much of the speeches and snuck out while they were in full swing.
I found myself starting to consciously/subconsciously think about some things during the night although having fun. My friend and her chap were doing quick catch ups during the night about their upcoming trip to cycle around in China on a holiday, and how Byron Bay was as they'd just returned. Not to mention her beautiful posture and how I missed having such great posture. Due to the nerve damage all the way down my spinal cord the most I can do is just lift my head off my pillow, I am totally unable to have some form of posture for a few minutes as there is no way I can hold that all the time. I now see myself as this terrible hunchback when I look at photos and in the mirror. I miss that body, me.
I also have another wonderful friend and her son leaving for London and Ireland on the same day for a month. I used to travel a lot for holidays and loved it especially that feeling of excitement when you're packing, arrive at the airport, go through all the security grills and waiting until you can board. Then the holiday really starting to kick in when you find your seat on the plane, the smell of it, and then sitting in the seat and knowing you're on your way. I remember all of that as if it was yesterday! My last holiday was actually August 2009 when I went up to Merimbula in Queensland. That's 7 years ago!
When I woke the following day I didn't feel quite myself and did my core exercises and went through my usual routine once I was up. That feeling just wasn't going away and sp I started to look at what was causing it as an immense sadness was starting to come to the fore front. I realised that I felt as though that could have been me having fun with friends, travelling, wearing great clothes other than practical boring clothes that I now wear, and the list goes on. This disease has really robbed me of that and so much more that is not only superficial. It's here to stay and as hard as every day is just to get through and remain as independent as possible, it only seems to get more difficult each year. I'll never have that life again and I'm sad, I'm crying now.
I'm not jealous or envious at all of friends going away and having amazing adventures and holidays, I'm sad.
I've been looking at going on a cruise to New Zealand because I keep hearing how wonderful cruises are in catering for people in wheelchairs, and I've never been to NZ before. I called a friend who is a travel agent a few weeks ago to ask her to look into it for me. She came back to me with so many options and mostly for 2018 that it was all so confusing. I asked her to send me brochures so that I could see cabin and deck locations, dates as of course prices. I'd like Mum to come along for a break and a holiday as we get on so well and then she doesn't have to worry about me. I also need to take a carer along with me as I need help getting out of bed, back onto the bed after showering and dressing every morning 7 days a week. Then the same for when I go to bed although I do a lot more myself, and perhaps if I need help during the day. I also need to have a cabin with a shower that is accessible for a special shower chair, which I'd need to take with me. I'd need to organise that to be taken along as well as a bed like the one I have at home and pay for that. I'm great with planning and research, and love doing those kind of things however the cost will be huge by the looks of things and I miss not working and earning money so that I can do these things,. I feel sad not to mention exhausted.
I have also had a cold for 3 weeks and I'm exhausted from that and sad as well as we've had some great days weather wise and I couldn't go out and doing something fun because I felt so rotten.
I also needed to go to Bunnings hardware and because of the cold I didn't feel like organising a cab and then waiting and all the hoo ha that goes with getting their and them asking how long I'll be thus not having the time to just take my time. For the first time since I can remember I just wanted to hop in the car and drive down there!
My bike is broken, AGAIN and I have been dealing with the rep in Melbourne who prefers to run away than resolve the issue. It took a week for him to get here to see me which was today. He has now taken it away to look at the motor and the ball bearings (which personally I think are stuffed) but what would I know huh, I only use it every day. He also continuously insinuates that it's my weight without actually saying it as such. He's a tiny little weasel of a man, anyone would look bigger next to him! At least he gave me a replacement while he works on it. I'm exhausted from constantly calling him and fighting him to get here. He is a control freak and hasn't taught anyone else or employed anyone else to help him! Idiot!
I also changed hairdressers a few months ago as the hairdresser as I'd been going to for years refurbished the salon and I now can't get my hair done there. The reason being because the basin where they was your hair and the chair in front all come in 1 unit rather than the chair being able to be moved away. The reason it's annoying is that they pull the chair away so the wheelchair can tilt and back up to the basin. After many phone calls to salons in my area I found a chap close by where the chair moves away. Wooohooo I'm back on track! I've been going there and the bonus is it's almost half of what I was paying, however I hate the colour and cut. He's lovely and been hairdressing for years but he can't get it right!! When a girl's hair isn't right, then there is not much enthusiasm to go out as you feel pretty yuck about yourself especially because my body is so stuffed internally and visually now because of the NMO. My hair is the one thing that I feel makes my appearance look ok and makes me feel good about myself.
I have stacked on so much weight due to a combination of not being able to exercise to burn off calories, and I emotionally eat. I literally just think "Fuck it" when I'm down and buy myself treats. I eat salads, porridge and vegetables, do a minimum 2 hours of exercise a day (and that's just to keep my body moving) etc but will "reward and comfort" myself with biscuits or chips. I'm embarrassed and that makes it hard to love ones self. I'm sad and depressed.
I'm also finding out more and more how many more difficulties are out there for people in wheelchairs. I love going to the movies and enjoy Gold Class as well. Village cinemas have ONE seat per cinema that can be moved to make way for a wheelchair. That means I can never go to gold class with a friend in a wheelchair! I went to the Lido the other day and that cinema (not GC) had just 1 wheelchair spot! The non automatic disabled doors everywhere are so heavy that I can hardly get out of the toilet without it damaging my chair in some way. Imagine a frail elderly person coming out of a disability toilet? The next person who went in would find them splattered on a wall like a squashed mosquito! I can't get into most cafe's, restaurants and shops because they have steps which means I have to look for places that are accessible. I often look at street view on Google maps and call the place, as well as keep a log as to where I can and can't go. I can't get my hair done, it's everywhere. I even went to a place the other day that had NO ACCESSIBLE TOILET! I called the council to ask if that was possible and was passed around to 3 different departments and finally finished a very frustrating and confusing conversation with a very rude millennial.
I recently got a letter from Medibank Private (my private health cover) re the fact that they will be stopping the points you acquire that convert into Flybuys points each year UNLESS I can show that you do 10,000 steps or more a day by using a device such as a Fitbit (and named some other brands). I spend just over $3,000 p/a with them and have been a customer for about 25 years, plus am in a wheelchair so am very limited to doing 10,000 steps a day. I called and lodged a complaint which has sent them into an absolute spin because the lovely person handling the complaint was going to the marketing department with it and I haven't heard anything for a while. This is 1 fight I'm taking on as I'm sick of the discrimination. What is wrong with the world as there are so many people in wheelchairs, walkers, elderly people etc who all fall into the same boat as me.
And as for departments out there to assist us with these issues, well it's all lip service, and that's if you can find them. I once spent half a day on the phone and internet looking and calling departments, speaking to very nice people who would give me another number to call to the point where I actually went in a circle and landed up at the very first department I called, what a joke!
I can see why disabled people just give up. I'm not giving up but I feel sad, slightly depressed, exhausted from most things being a battle and being shut out of so much due to lack of accessibility. Including the laws, thoughtlessness and attitudes of people and companies who just don't care and understand disability. I hate having to use the word discrimination to get somewhere however that seems to be what's needed. Mind you if you ever read the laws around discrimination, not only does it go around in circles, once again it means nothing and covers companies rather than real discriminatory situations.
I wonder to myself how can I change this? Then I remember I have this disease where fatigue and exhaustion plays such a big part of it hence making it so difficult to take these challenges on. My brain works, my body doesn't. It makes me depressed much of the time, very sad and exhausted, and I keep finding out more and more about how limited I am because I'm in a wheelchair, discrimination and ignorance really does exist for such a large part of our community.
The 3D's, DEPRESSION, DIFFICULTIES & DISCRIMINATION
In a wheelchair permanently since early 2010 due to a disease called NMO. I am loving getting out and about in my wheels. My blogs capture my journey.