Monday, 8 June 2015

Another adjustment

Wednesday last week I rotated my ankle, whilst laying lounging in the sun. I heard a click and felt a pop.  Pain was intense and I could not move my foot. Thankfully my husband was off work. A&E was not necessary as I know my body over reacts initially. As it was on Friday I saw my podiatrist who sure enough told me I'd damaged my ligament. However prognosis for the outcome was unclear, due to EDS. This was possibly the decline I was warned about. I was warned it may only be months before the feet decide to give up altogether and make walking anything more than a few steps impossible.

Of course me being me I am fighting against this all the way. Whilst I have more movement back in my foot, if I try and walk more than a few meters it gives out and I end up on the ground. I am resting as much as I can. Using crutches where I cannot use the wheelchair and hoping this is just a damaged ligament and we will be back to being able to walk across a room without ending of the floor.

Yet it has brought to light this is yet another adjustment I have to make. One if I am honest scares me. It will mean I become more reliant upon my family. Dear social services won't provide me with someone to do necessary cleaning or help. My husband and kids are my carers. Therefore we will need to make adjustments to the house. But with what?! Money does not grow on trees. I should know, I'm a gardener. 

There are so many things I would like to enhance my quality of life. A power add on for my gorgeous manual a wheelchair, the NHS kindly provided. I cannot get out much as I cannot self propel for far. My scooter is too heavy for me to lift into boot of the car, not very practical around local shops! Even less than my old power wheelchair. I still yearn to get off road. To feel the wind in my hair and the sounds and smells of nature. To feel inspired to be able to weave a story in my head, to put down on paper on the days I cannot get out. Yet it seems adjustments to the house may well have to take preference.

One day I will achieve my dreams of being as independent as I can be. One day ... Let's just hope this is a blip and not another urgent adjustment to make. Saying all this I count my blessings daily. Things could be far worse. I have a loving husband and kids. I don't have the pressure of needing to work to make ends meet. I have my writing, my crafting and some great friends spread across the world. 

Friday, 27 March 2015

Wheelchair situation update.

The NHS have agreed to swap my powered chair, which constantly broke down, with an active user rigid frame chair, so I can use it in the home. The loan chair I have is great and already making a huge difference to my life. The downside to this I need to work a power add on to it. Whilst I can whizz about on flat, smooth surfaces no problem anything bumpy or uphill I cannot manage.

Here the dilemma starts: 

The chap who came to pick up my powerchair yesterday was a little surprised they were letting me give it back considering my joint issues. But I explained I need it in and around the home and the powerchair is not suitable. We then went on to discuss power-add on's. His recommendation was the eMotion wheels. But he went on to say with my back issues that it may well be better spending the money on a powerchair instead.

I have to change my car in November as the 3 year lease with Motability is up. I've had to cancel down my cancellation of the policy, because of said chair set up problems. I still have a powerchair which I can use, but it is falling apart, quite literally, will need replacing soon.  To get a hoist and car which suits my family needs we are talking still £2,000 but with using the rigid frame chair more it should make the powerchair last. BUT it does not get over the fact I hate using the powerchair as it is not manoeuvrable or comfy! I feel happier in the manual chair.  However what I have to look at is the way I feel so important? £4,000 ish for the powerwheels plus car. Or £2,000 for car and hoist. Either way I am going to need to get making and selling more to help pay either of these off!

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.