Thursday, May 01, 2014

Vision, Dreams and Reality

The Vision

The second week that I was away from home I was in Scarborough for a few days respite.  Whilst there I had nothing I needed to do, all my meals were made, my room was cleaned and I could do just what I wanted, bliss.  As I was less physically active, my mind took over as it often does, but this time I was able to document much of it. I had some new ideas, covered some difficult topics and came up with a plan.  this was all well and good, but then came the reality and realisation that this is only possible when real life stops and I have no responsibilities.  This hit me before I even got home whilst spending the weekend with Emily and Rob and getting literally no sleep at all on Saturday night,  finally waking Rob and bursting into tears with fatigue and disappointment, it felt like all my dreams had come crashing down.

My thought was to work on a new website and create a new look Crafty Jane's.  This is the vision as I wrote it down whilst I was away.

I have spent most of the last 20 years regretting things that have been taken away from me by illness and bad luck.  I spend so much time focusing on what I can't do and what I want to do, but am denied.

Many people say to me "what do you want to do?"  "What can you do?"  It all seems quite hopeless as the things I dream of are mostly not possible.  So here I am trying a different approach.  Within my limitations what can I do?

  • I can gather information
  • I can organise
  • I can share experiences and information
  • I can make things (albeit slowly)
  • I can think.

So here is my plan for a new look website.  It's called Crafty Jane's as I used it originally to sell cards, but maybe my creativeness lies in other areas too.

During my life and illness to date, I have gathered many experiences both in my working a personal life and I want to use this to provide information.

My vision is for a multi faceted site, to house my blog Crafting with ME and also to contain information and resources in the areas important to me;

  • Living with ME/CFS/FM 
  • Having Disabilities
  • Food (due to food intolerances)
  • Craft (my interest)
Much of the site will be like personal filing system as I can never remember where I saw something, or how a recipe turned out or where I bought a product.  Hopefully it will be a useful resource for others too.

In the ME sections I hope to include interesting articles, the effects of any 'treatments' I have (they are often quite unexpected) and reviews how ME friendly places are from a local coffee shop to bigger visitor attractions and holiday places.

The disability sections will try to include experiences related to disabled parenting, mobility issues, deafness, mental health problems and issues around support and understanding.

Having food intolerances makes eating very difficult.  I can never remember which recipes and products we have tried and what they were like and where we found them.  eating out is a nightmare, but there area a few good places and they deserve a mention..  This information will be in this section.

Finally a craft area.. Again I can never remember where I bought things or saw something I liked, only to never find it again.  I use many websites which will be on a links page.  Some sites may deserve special mentions.

I know many crafty people, perhaps that should be people who craft!  I like the idea of giving some people space to write about themselves and their craft. Also in this section a gallery of things made and pictures of progress, including details of products used if I can remember!

Another thing I do is think, my mind never stops and can be very distressing and tiring.  I find writing things down helps.  I am not very good at speaking out or speaking coherently, but armed with pen and paper I can write until I drop.  Much of this I hope to include in the blog area, but any bigger issues may go in a separate section.  For instance also during my respite I have written a long piece about honesty.  All I need now is to work out how to get it onto the computer without have to type it all out.  Things seem to flow much better on paper (sorry trees) that sitting typing and its a little less tiring and uncomfortable.

As with anything I do things will progress slowly as I work within limitations and my daily routine.  My daughter is now 7 and needs less care, but is still very demanding of my time and energy, which I want to give her whilst I can and to the best of my ability.

The Reality

On Saturday Emily and Rob arrived for us to spend the weekend together in Scarborough before returning home.  This is actually not a good end to the respite as is it undoes any benefit I may have had from several days of rest. It would be difficult to just return home and them not have had anything though.

I was soon exhausted just from Emily's chattering let alone doing things as well.  That night due to extreme exhaustion and conflicts in my mind I did not sleep a wink and was very distressed.

In reality my website vision or any other vision is impossible in everyday life, I only manage to have to idea as life had stopped for a while.  My everyday life and routine take all my energy and never feel rested or well and am constantly pushing my limits and it all becomes a conflict.

I really need to be doing less not taking on more as that is recipe for disaster.  I already have many things I want to do for example things with Emily and craft projects, so why did I think I needed another challenge?

If I do less, who does the things that I do?  I already have a lot of help, an issue in itself as it means I often have people in the house and they want to chat or are making noise etc which is difficult for me.  I have to manage all the paperwork related to employing people and ensure that we all know who is doing what when, that in itself is hard work and I often wonder if some of the help actually benefits.

How can I achieve a balance between what I want to do and what I need to do and still not do too much? What is the best use of my time and energy and what is best for my family.  I already feel that I am not giving enough to my family and that my needs put a lot of pressure on them and that Emily is not getting the childhood she deserves.  Anything that I do usually requires help from my husband who has a full time job, cares for me and has his own health issues so how does my vision help anyone?

I know that I need an outlet for my thoughts and ideas and frustrations, but life does not stop to enable this to happen.

Having the respite was good and in some ways helpful, but once back in the real world it all becomes an unattainable dream, along with many others on my long list.


I have not reached a conclusion yet.  It feels impossible, but the thoughts and dreams don't go away and are fighting to find a way.  Meanwhile life goes on and I do what I can and its always too much and I feel ill, there is always so much I want to do, but have to say no to.  What else can I do?

Card made for my Uncle's birthday, in its not quite finished state, but all stitching done, pattern from Stitching Cards


  1. wow Jane, seems to me your dream of a website is more or less up and running disguised as a blog! What a lot of interesting, honest and valuable comments.Chat away, dear friend! It's also important that non-sufferers like myself have a glimpse into the world of M.E., It's too easy to just see the illness - the weakness - the palor, poor appetite and foggy-mind rather than the personality and intelligence of the individual trapped within. Good luck!

  2. Thank you Helen. Thanks for the wonderful stay last week.