Tuesday, 3 March 2015

Random ramblings

I am not the best at keeping this blog regularly updated. However, what it does show you is a snapshot of what it is like to live in my head.

Things have been a bit chaotic of late, regarding wheelchairs and cars. When the dust finally settles I will do a more concise update. But NHS have agreed to give me a rigid frame chair, which is the best thing ever! I feel more free in it, than I have ever done in the powered chair. I have started using it in the home now on a daily basis. But times like cooking, stairs etc it is impractical. But by doing so I have cut my collapses down from two a day to one in every two to three days! I am trying to keep a level of standing going, just so I don't decondition. All that is positive!

I am still going to need a power add on to go onto the rigid frame chair, as hills and uneven surfaces are proving too much in it. But a few sales of knitted / crochet items are slowly starting to trickle in. My dream of getting off road is growing stronger as the wheel of the year turns to spring!

I am feeling more upbeat than I have done in over a year. This phoenix is beginning to rise from her ashy pyre.


Wednesday, 14 January 2015

I got to pondering ...

I love watching The Weatherman Walking. In which our (BBC Wales) Weatherman goes walking through the stunning Welsh scenery. Often laced with historically interesting facts. I record them and watch them when I can. Any regular readers to this blog will know about my need, desire,heart yearning absolute requirement to get back out in nature again, off the tarmac road. It has been the singular most difficult thing to comes to terms with regarding my change in mobility and living with chronic illness. I have pretty much accepted I need a wheelchair, can only standstill for less than two minutes and now my feet are falling apart. What I cannot refuse to accept is to let it stop me.

Ultimate ambition is to go mountain climbing, well scrambling. The solution I need to achieve this is £15,000 ish and maybe a long way off (but I will get there). In the mean time I am researching walks which I might be able to do in a more affordable off road wheelchair solution. I wonder how many are out there? Are all with stiles and fences? Just by watching the latest episode of Weatherman Walking!

So pondering has led me to a new challenge - game on!

Friday, 9 January 2015

Operation Wheelchair - first target, Rigid Frame Wheelchair

After a lot of research and talking with various companies, I still cannot decide what the best 'power addition' to a manual wheelchair will be. So the first target is to get a rigid frame wheelchair. The 'add ons' for this sort of chair gives me a wide scope of things to choose from. With the decision to get a Wheelchair Accessible Vehicle, when my motability car is up for renewal (providing the DLA / PIP thing goes through OK) the pressure is off on making the power addition decision. BUT with todays news that I am going to need a wheelchair more around the home, I am focusing on getting a Rigid Frame Wheelchair.

First target is to make between £1,500 - £2,000 Sadly the cost for this sort of chair. But it will be a chair that is built around my own measurements so will be less stress on my joints and a smoother ride.

First things for sale will be going up by the end of the month on my facebook page. So please stop by and keep an eye on things.

Wednesday, 17 December 2014

New Years Aims

New Years aims:

TRY and learn Welsh (any Welsh speakers out there that can give me good pointers on where to learn, I would be greatful)
Learn how to Quilt.
Get knitting to get Kris Crafts going to get my wheelchair then off road solution.
Re-release Fool's with a different opening and different name.
Re-release Plot Bunny with new illustrations.
Finish and pass Herbalism course and beauty product course.
Start researching new business venture with beauty products.
Learn to be kinder to myself.
Help my daughter work a way of raising disability access awareness.
Write some new stuff.

Wednesday, 10 December 2014

Disability Discrimination?

Since the high court ruling that  bus companies cannot, by law, force parents with pushchairs out of disabled spaces, there has been a bit of a foray on disabled rights front. As this is something I feel highly passionate about, being a wheelchair user myself, I wanted to add my small voice to this debate. For the sakes of argument here I am only writing from a wheelchair users perspective. I am fully aware there are other disabilities out there.

Ultimately what needs to change is peoples attitudes:

There are those wheelchair users who have such large chips on their shoulders, it puts the grand canyon into minuscule scale.  There think the world should move out the way for them, everything should be given to them and they resent the fact they have to use a wheelchair. Bitterness and resentment rolls off them in great waves of negativity.

However, most of us want is EQUAL rights. We would love to go shopping in the same way an able bodied person can. Got into any shop we want, get down an aisle we want. We expect to be treated in a way you a normal bodied person would expect to be treated.

People seem to resent people with disabilities. Why should they have .... I am quite certain there are a lot of people who are disabled out there would give up their few perks to be 'normal'. The very few things we are granted to make our lives easier, are begrudged by others. On the paid or unpaid disabled parking I sit on the fence. I happily pay for parking, but if I don't then I will happily use it. Disabled parking spaces, please don't get me started on this. I have people shout at me for using one. I am late thirties outwardly look normal, right until the moment I fall on the floor. When I go and get my wheelchair out the boot, people look at me as if I am faking it! I have seen people use them, run into the shop and run out again, without putting a blue badge up. Yet have seen people who need two sticks to walk, have to park far from the shop because they are taken by people who don't need them. I need the space to get out the car easily, get my wheelchair out the boot. But if no spaces are available at least I don't have to struggle with walking. Just be mindful people, not all people are fakers.

Then lets go onto the attitude of people who run shops. 'Why should we make any adjustments that cost us.' Answer, you will bring in a section of the public you are excluding and could easily increase your profits. Not all solutions need to be expensive. A suitcase ramp and a bell to push to get assistance. I used to run a small business and appreciate how tight the margins are so now as a wheelchair user, I PERSONALLY am happy with this approach. Larger shops or chains of shops there is very little excuse not to make adjustments. My 13 year old daughter is looking at running an awareness campaign, with the help of her young carer support group on this. It personally almost reduces me to tears of frustration on not being able to get around a place, go see the things my kids want me to look at. Buy the products I want as they're in a place where I cannot get to and there are no staff around to ask for help.

On this particular blog I won't get into the way people treat people in wheelchairs. It is a minefield in its own right.

All I ask that both sides of the fence treat each other with respect. Wheelchair users, are you asking for something because you feel you have the right to demand it, or do you really need it? Could you wait for a bus that comes along in 10 minutes time? Could you ask for help? I know this feels demeaning but in shops that have tried, is this too much to meet them half way? Person with child in a pushchair, can you fold and move the chair? How would you feel if you were the one with physical disabilities that meant you could do the things you take for granted?

As I started this post with, what needs to change is peoples attitudes and not let resentment and bitterness blight the future.

Wednesday, 3 December 2014

Bad dreams in the night, over DLA / PIP

I woke from a bad dream last night, sweating and heart racing. I had been switched from the DLA system to the PIP system. The PIP assessment had not taken place and I lost my disability payment and my Motability Car. I had to walk Edward up to the bus top on the main road. Some two miles away. Then collect him from the same. This is along country road, winding, without pavements and up hill. This was taking four hours out of my day. I was coming down from dropping him to the bus stop and my chair stopped working. It was in the middle of a bend and the morning was cold and misty and a car came shooting round the bend and hit the back of wheelchair sending me flying. The car shot off. I was laying there cold, bleeding and broken unable to make a call on my phone as I could not afford to put credit on it that week.

Thanks George Osbourne.

Monday, 1 December 2014

Operation wheels is go!

I am grateful to my good friend Karen, of Karen Burnett designs for being a fixer in this. She's made contact with fellow designers and some have kindly given me permission to use their designs to knit and sell from. Some designs I have found the designer already allows this under license. I will write a blog post giving credit to all in the near future. I will of course be buying the designs and buying my own yarn. Thus supporting them and where possible indie dyers in return. All is good.

I want to blow a metaphorical raspberry at the neigh-sayers. The ones that think I should be finding a cure rather than concentrating on using a wheelchair. All I can say is I have lived with POTS for 10 years. EDS all my life. There is no 'cure' to POTS whilst a vast majority of people can see a remarkable improvement. Mine has plateaued where it is. Its a big improvement for me. Without my drugs I would not be able to make it out of bed. So excuse me if I concentrate on getting on with what makes my life more complete rather than chasing magic cures at the end of rainbows. In the mean time if the medics find one that works, I will be there in line!

With a start total of £6,400 then my off road solution. I better get these needles working.

Thank you Karen for helping me make operation wheels a go!