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!

Thursday, 20 November 2014

Nina's Need

Nina and I met by clashing heads on a thread in an EDS group, on Facebook, to which we both belong. I knew then she was having troubles with the NHS recognising the seriousness of her issues. My idea at the time was to write a book to highlight the plight of EDS people, her idea, from what I remember, was to lobby parliament. Effectively we were saying more awareness of this disorder needed to happen, but singing from different hymn sheets. I just accepted that we two would forever have differing opinions and felt no resentment. However, as is often the case in these circumstances, she had not realised the battle I was facing of my own, albeit slightly different from hers. As a lovely friend of mine terms it, ‘I have killer POTS’. It’s not literally going to kill me, however it is more than just a nuisance. After that we hit it off and now are on positively friendly terms. 
Nina is now trying to raise funds to have surgery to stop her spine sinking into her brain. She has a complication of EDS called Cervical Cranial Instability CCI for short. Sadly this surgery is not recognised in the UK. This is partly due to NHS funding. Nina has to raise £70,000 for this operation to take place and give Nina her life back.
Sadly lack of NHS resources effects so many people not just Nina. Cancer drugs that extend lives and a post code lottery on best care giving methods. Let alone those struggling to get the right wheelchair on the NHS or other things they need to make their lives easier. 

EDS is a complex condition. There are many variations of it, including some which seriously debilitates the person and some which limit a peoples lives. Even those like my own, Type 3, which is considered benign are not easy to live with. Some people may have very little effect from it and go around their day to day business. The upshot is EDS effects no two people the same. Certainly medics do need to be more aware of this condition and how it causes problems.
If you want learn more about Nina and her need please visit her website Nina’s Need. There is a link to her funding page there. Nina is also hosting various fundraising events around the Burton - on - Trent area and people in the locality are coming to her need. Nina and a fellow sufferer Karina have a YouTube Channel you can have a look at, to help understand more. 
I myself am making her a beaded shawl to auction off (these will normally retail between £50 - £70) and of course a snuggly one just for her to wrap herself in. 
If you can help in any way, even just by sharing this blog post, it would be great. Even a little can help.

Monday, 17 November 2014


Yesterday afternoon I was really upbeat. I found, what seems like, the perfect starter solution to my off road adventures. Being a Witch and a writer, there is nothing better than being out in natures glory (and her moods) for grounding and progressive thinking. This is the solution I found. TGA Vita X Whilst it will not quite give me my dream of climbing Pen Y Fan  The solution to that is called the Terrain Hopper. My dream off road machine. Where I could not go with that...  But that solution is over £15,000 ! A price of a car. Still from Little acorns, mighty oak trees grow. Maybe one day, who knows.

That is where the oxymoronic bit comes in. Later in that day I went into 'I don't want to have to use a wheelchair or mobility scooter. I want to walk and run. I want to jump streams and chase waves.' It seems the moment I come across a solution which would give me a better quality of life, I go plummeting down and almost into a self pity party for one.

Today I have began to shift that mood. Imaging the walks my family and I could go on. The kids will get to experience the proper out doors, not just the bits where my powered chair can go. Not only that but perhaps write a journal to allow people who are not as lucky as me, to experience what I do and dream.

I started working on a way where I could get my crafting to start paying for it (and my writing if I get my books back out). I ran the figures and thought 'I cannot do this, this is going to take years.' Followed shortly by 'my stuff is never good enough to sell I won't get there.'

I really don't know quite what has happened to me over this last year, but my confidence and drive have gone into free fall. I need to halt this and pick up the tempo. As I keep telling my daughter, if she does not try and work hard, no one will do it for her. So unless I try and do this. Unless I start to believe even small miracles are possible, this won't happen. One thing that I do want, is that part of my life back, even in a compromised way.

Wednesday, 24 September 2014

Blank pages.

Sat here staring at the blank page, ready to write one of sporadic posts, when it came to me, life is a blank page. These last few days I have suffered threats, betrayal and mudslinging. It never ceases to amaze me what lies people choose to fill their blank page with, just to justify to themselves their ends justify the means.

I know I am no veritable choir girl, I am no shinning angel and certainly full of human faults. But one thing I am not, that is deliberately malicious or cruel. I have known too much of both over time to want to walk that road. I try to be a nice person, I care about people. How they are doing, how they're pets / kids / granny etc is doing. This maybe as sporadic as my posts here, but I do care. It was caring that kicked this week off. But I won't stop caring, I will just moderate it. Which brings me around to why I have titled this post blank page.

In life bad things happen, things don't go the way you want, the way you hoped or even throw you a curve ball so hard it spins you out of orbit. If we sit and dwell on the bad things, then more bad things will attract, until the point we are drowning in our own despair and sorrows, becoming bitter and twisted.

Life is a blank page, fill it with hope, fill it with joy and fill it with love. Bad things happen, we cannot change that, but cry the tears and give life to hope. Write your life the way you want to live it, not how you feel it is going.

Thursday, 24 July 2014

Flip - Flopping

After a conversation with my daughter this evening about lack of confidence issues, I mentioned to her I have a terribly low self-esteem. I always think other peoples work is better than mine. My work is inferior. I am not good enough and so on. But she would not believe me at first! Why? Because I am a fairly confident, slightly eccentric personality.

The truth of the matter is I LOVE being eccentric. My lack of confidence, in part, stems from trying to fit in. Wear the clothes other people wear and do the things other people do. I get to a saturation point and then it starts wearing me down. Even this weekend certain members of my extended family were saying 'I cannot possibly wear my wonderwoman converse out!' Err Yes I can and my multicoloured dress and turquoise blue leggings. I felt great!

Only if my self belief in my talents (yes I am struggling to call them that) could be so easily solved! Yes, this is why I flip-flop between projects. Why now I am concentrating on my writing, mainly.

Monday, 7 July 2014

Round and round it goes, where does it stop nobody knows.

I have been reading back through my blog this morning. Trying to find a post about something. I found it. The one thing that struck me is how I keep fighting writing.

2010 I completed Nanowrimo and the bug sunk its teeth into my soul. Yet from that moment I have fought, with every sense of that same soul, concentrating on this. Doubting my own skill, doubting my ability. Do you know what? There are people out there who will criticise the fact, your technical ability of writing lacks. I don't necessarily get the right structure to a sentence, my grammar is not the best and I have been know to re-write a whole paragraph because I cannot remember how to spell a word. But one thing I do know how to do, that is weave a story. I can spin a tale. Yet people will only focus on the negative of my writing. These are not the finished, these are just snippets for peoples feedback. ALL they concentrate on is the 'wrong writing' never the content, even when it is the content you have specifically asked feedback on. It is a hatchet they wield with the greatest of glee and gives them a sense of self satisfaction. It is as if they are say 'oh look you who are inferior because you cannot structure a sentence with the grammatical correctness of an Oxford Professor. Before anything goes to publication now, I use the services of a decent editor. But even THEN people will judge my work because it is not written stuffed tight with highly literate writing.

Within the last few weeks people have even 'suggested' that I give up writing all together. Focus instead on making my crafts and being ill. Oh never quite those words, well crafts bit but 'listen to your body' is only so good some of the time. Where does the focus shift stop. If I listened to my body I would do nothing in a day. Getting out of bed with your heart rate racing and everything in pain, is not the most productive start to the day.  I may not be an academic genius, but I can spot the hidden dagger in the undertones. Not due to paranoia either, for when I push further and winkle it out, it glints for a second before being hidden back in the candyfloss.

People wonder why I never manage to commit to something. Because it takes a forcefield made of titanium and self assurance of the really egotistical to brush off all those comments and remarks. I know I am meant to be writing. It is not a choice, it is a compulsion. I enjoy crafting and will continue to enjoy crafting. But I hate it the moment I try and commit it to something more than a hobby. Yes I need to be stronger, right now I am at my lowest confidence point, ever. I have been at some really low ones before.

But there are few gems amongst the rocks and for those I am forever grateful. I may appear to be strong, for all I know I maybe strong. But I cannot do this alone. I cannot face demons, focus on something specifically and push forward without support. THE only person who understands this is my Dad. He said I am proud and I have to set myself goals and ask for help keeping them.

So round and round it goes, where does it stop .... HERE. NOW.

I am fragile, I am vulnerable and I am in a very insecure place. But if I can shoulder my responsibilities, hold my head up and take those steps forward, then I can ask for the support and guidance as needed. The support I will be after is not the 'don't you think you should be doing something else' support. If you cannot offer that when ask, back off.

The buck stops here. I have ultimate responsibility for myself. Today positive steps and positive thoughts. I am going to achieve my childhood dream and be that best selling chart topping author.

Wednesday, 2 July 2014

RIP Greebo cat

Today I had to put my 1 yesterday old cat down. He was suffering with organ failure. He had always been a fluey cat, since we've had him. Knew all the long he may not make old bones. But we did not expect to lose him so soon. The family are devastated and is one of the hardest decisions I have had to make. But I know he's no longer suffering and can go chasing mice in kitty Valhalla.