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!

Wednesday, 26 November 2014

Knitting to fund my wheelchair

For those who are reading this Blog for the first time, I suffer from two conditions which to me are debilitating. Other people who suffer can vary in how it affects. These conditions called POTS and EDS have taken away a lot of my mobility and I collapse on a regular basis. I suffer with high blood pressure and have suspected peripheral vascular disease, which eliminates some of the standard treatment for POTS. I am highly chemically sensitive and tried most drugs! I developed POTS in pregnancy over ten years ago now. Despite trying to exercise it away its deteriorated. Later I was diagnosed with EDS Type 3. The medics cannot be clear as to what condition is directly attributing the collapses, therefore even if a 'cure' for POTS was found, they cannot say this would change my life significantly. As most cases of POTS secondary to EDS are life long.  One upside, I never black out. Without the drugs I am currently on, I would not make it out of bed. So I consider this a big win. However 'over doing it' makes matters worse. This some days can be as simple as making a cup of coffee. Others I might manage a little light sweeping or housework. Most of the day I spend sitting down and trying to balance the needs of a house, wife and mother. I try not to let my condition affect the family life. Often this means 'over doing it'.  As yet I am too stubborn to use a wheelchair around the home, even though I've been advised to. This does not even touch upon the effects of EDS. I don't want this to sound like a pity post.

I need a new wheelchair. My NHS manual is too heavy for me to push and my powered chair is dodgy and has a controller that seems to be possessed. Wheelchair services don't see this as an issue, therefore it is not fixed. I'm on the waiting list for another referral, to get a chair which does not hurt by back so much to use. I've been given the heads up this could take up to two years. Therefore I have decided to work a way of saving for what I need.

The wheelchair solution I would like, will give me the maximum amount of freedom and give me some level of exercise. It is also will be easier to transport. However this solution would not be suitable for going around the village and down the local shops, due to very uneven payments and steep hills.  Or on the days where my shoulder or elbow is having a hissy fit. I am hoping that the NHS come good. Due to my feet problems and damage caused by frequent collapses I am going to sooner or later have to face the fact of using the chair full time. Therefore I want to make sure the solution I have is the best one for me.

The solution:

Emotion wheels or equivalent. The base cost of these is £3595.50. However by the time you add the anti tipping wheels and a few other bits for you are looking closer to £4,500.

The chair: It can be either a folding or rigid frame. But I've been advised that solid will be best as it will give a smoother ride and less to break down. Cost of a chair that is lightweight you could be looking up to £2000.

Therefore the maximum cost of this solution is £6,500

Once I have made this amount I am going to start saving for my off road solution as per this blog post.

People have suggested I fund raise by crowd funding or other methods. This feels wrong to me. I already count my blessings that I have a husband with a good job and I don't have to stress about meeting bills or putting food on the table. With one wage we cannot meet all the demands living with a disability puts on a household. In the style that was installed into me by my grandmother, I will work for it!

This is where the title comes in. I plan to knit and then sell the items I knit to fund my solution. Any profit after materials and selling costs goes straight into my savings account, which I have set up for this purpose. This is not my 'job' as I am still trying to find something I can do from home which lets me work it around my health issues. This is purely to improve my quality of life.


Sunday, 23 November 2014

Feeling like I am losing me.

I cried last night in my husbands arms. "I've lost me. I've lost who I am." Poor chap thought yet another nut had fallen out of the coconut tree. His response was a simple "Why?" My response was a little lengthier, sporadically interspersed with out pouring of tears. The upshot was there was no specific reason. I am coming to the conclusion I haven't lost her at all. Factors are keeping her down, but she is not lost. Maybe the tarot card the 8 of Swords could be deployed here. However, I will try and write why, in the hope it may make anyone else feeling similar, feel less alone. Please note this is written from a personal perspective and no two people feel the same.

***

There is the pain of wanting to go, in my case, racing through the fallen leaf litter or running across the sand. Hiking up on the hills with wildlife around you and the majesty of nature. There is the excruciating pain as you hobble on feet, that are getting too sore and unstable to walk on. The fatigue that dulls your brain and never seems to end. The collapses without any warning, watching as the floor comes up to you, until the point where your eyes close naturally and open in the next instant looking at the floor. These can be from a gentle sag of the knees to a full blown, body slam. The helplessness as you struggle with some tasks because the joints in your body don't want to play that day. Some days when you can hardly stand long enough to make a cup of coffee, let alone walk back to the lounge with it. The lack of social life, lack of support for me here, as no real friends locally to call on and family at least 2 hours away. 

There is the heart ache as you see your children worry. Of them not wanting to go to school, when you are having a rough day, because they want to stay home and look after you. Knowing your temper is shorter than it should be because the fatigue and the pain. The feeling that they are missing out on things because of you. However much someone tries to reassure you this is not the case, no words will ever take away the pain of seeing disappointment in your children's eyes because a place is not wheelchair accessible.

It is the financial burden I put on the family. Type of cars that take a wheelchair. The cost of a wheelchair solution that works, whilst holding out hope the NHS can find one that does the job. Let alone my desire to have an off road solution to give my family something we used to do back, to give me a chance to be grounded out there in nature away from it all. Then there is the wear and tear on clothes. The dilemma between moving to a bungalow or making my existing house safer for me, which option is more cost effective.

Then there is my husband. He has to work away periodically, whilst an arrangement with work has been put it place these trips are limited, it the worry he has about leaving me. It is him coming back to find a wife totally exhausted and physically sore. The way he has to adjust to having a wife in a chair and unable to keep house or go out and have a second income for the family. He has to come home from a busy day and work and somedays cook dinner and do the chores.

The fear! My husband has diabetes and whilst if it is controlled properly it should not cause too many problems, there is the fear if it does how will I be able to look after him, this goes for ageing in general. How will I get to go and look around University or College with my kids, if this is the path that they choose to take. Fear I will become too sick to look after them and be a burden to them, even more than I am now. Sometimes for a rare moment there is the desire to run away from it all and hide. But I cannot I love, them all so much. The fear my husband will leave me. I think you are getting the picture. I am scared if I do anything else I will fail again. I am scared of entering back into the indie author world. Sometimes I think I am scared of fear itself.

It is within this cycle I loose myself, get caught up in this trap and you loose your identity. You become your illness, your fears and your hurt. This is not depression. Too many people jump on that these days, when they are just emotions that at that specific time are foremost. They can become depression unless you break the cycle.

Whilst none of the above will ever go away, I can work ways where it lessens it hold on me. After all I am still alive, I am loved and cared for. I am not without a few skills or talents. It is a case of looking what you can do, however small.

I can smell the summer rain, feel the wind in hair and the sun on my face. I can laugh long and hard at the things I find funny. I am a little eccentric and as my son delights in the fact 'I have not grown up'. I can love and care for my kids, I can scold and encourage. I can be there to pick them up when they are down and be the loudest to cheer when they achieve something. I can do what I can for my husband, being sensible to lessen the impact of him working away and not feeling guilty about the things I cannot do. I can be a support for him, I can argue with him when he's being a plank and going off on one.

I can knit and crochet. I do believe I can weave a good tale, even if my written efforts need an editor. After all, you've got to feed the grammar nazi's and give them fuel for their fires. ;)

Whilst I may feel scared, vulnerable and want to curl up in a ball. I cannot because when I do, I miss the real me. The me that is feisty, passionate, tender, loving and caring. Drive enough to run a small generator. So steps I must take, said in my best Yoda impersonation.

I will sign off here now. This has not been easy to write and bare my emotions to all. But I know I am not alone. I hope this may help those who are suffering too,

Friday, 21 November 2014

Time to knit for mobility aids.

As to my blog post a few days ago, I am on the quest for mobility aids to make the quality of my life better. Whilst I do have a few things, none are fully up to the job any more. The NHS can only provide so much and Social Services again only so much. We as a family cannot afford to fund all what makes life easier. So after considerable consideration I am going to start knitting or crocheting things to sell, to fund my mobility!

If you know of any knit / crochet designers that would allow me to sell products from their patterns please leave a comment below. I am planning on making hats by Wolly Wormhead, as to her licensing agreement, mainly because I love them. I will update later when I have items made and up for sale, from where etc. First I need to get my christmas knitting out the way!