Sunday, 2 March 2014


Today realisation dawned and when it did I felt as if I could cry an ocean of tears as sadness and grief overwhelmed me.  There is no specific point to this blog really other than for me to get this off my chest, to vent and let it out and hope that it will help ease this heaviness within.

When you are young you develop friendships that you honestly believe can survive anything - that the bonds are so strong they can NEVER be broken.  How wrong I was.  

I think I am a good and supportive person, although I am admittedly no angel and have made mistakes and hurt people on occasion.  Especially during the period after my mothers death, at this point in my life, although I have a loving and supportive husband and children who would do anything for me.  I lost sight of everything and dived head first into a dark deep pit, nothing made any sense and I felt so desperately alone without the love and support of my mum. We had a strong but tumultuous relationship - we spoke daily on the telephone and saw each other at the very least fortnightly.  The girls were incredibly close too and viewed my parents not as grandparents but as second parents.  I think that is when the rot set in, when my friendships with my lifelong friends started to deteriorate almost imperceptibly and the distance between us started with a small crack which expanded very gradually.

THEN, when the girls started to get sick one by one these friendships dropped off more obviously.  I don't know whether it was because I had to take the role of carer and was no longer able to go out, socialise and support others with their difficulties any more because my plate was now so full it was overflowing with challenges and problems which as one was sorted another grew and took it's place.  I must have become a bore, full of worry and anxiety.  Not a fun person full of light hearted chat and banter any more.  Good old reliable Tanya was no more - I had learnt to say "no" and very rarely said "yes" - often I fudge and say "we'll see" but inevitably it resulted in a cancellation of plans as the planned event, social gathering or whatever it was approached.

I am sad now, to look back at those friendships and see that they are now just people I knew and who I have very fond memories of happy times, life events and special moments together.  Over the past 5 years we have not made any of those memories together - because now we are just friends on facebook.  They don't support my causes or cries for help, they must find it all so very boring.  I often wonder, how would life be if the shoe was on the other foot - if their child/ren were chronically ill and suffering desperately every day - and they were having to research medical practitioners and possible treatments and fight hard to resist treatments being pushed onto them that are not appropriate.  To have to live a frugal life as working is no longer possible - caring is the top priority and become the very best advocate possible for the children.  If you wake up each morning exhausted before even getting out of bed, life with a deep sadness for something that is beyond your control.  How would that grab them then? Would they be wanting the support, patience and understanding from their friends, and would they then be interested in the charity appeals and wanting your friends to help get behind you and support them too on your behalf?

Am I that bad a person that our friendship is not worth fighting for, I feel invisible to you all - as if I have some hideous infectious disease and so you keep me at the end of a very long stick.  I feel so very sad, tired and rejected. Realisation of all that was, can no longer be.
I am grieving for the person I used to be - that happy person who had these great friendships which I thought would last forever.  I am sad that I am thought of as a boring selfish person now, who has only time for her children and husband, who has locked herself away from society and life outside of the home.  I make no apology for that - it is what I have had to do - when I married I made a commitment for life, when we had children together we made them our priority - whatever I do I do with them in mind, what is the best for them and for my husband too.  I made that commitment and if I have to sacrifice these friendships in order to do that then that is what I have to accept.  I honestly thought that we could survive this - but we can't.  Life changing events like these change you, make you a different person and alter your priorities and perception of life.

YET, in this strange new world I am now living, I have met some wonderful, supportive, understanding and funny NEW friends in the virtual world.  These people have given and continue to provide such support and love to me and my family that I have been really humbled and grateful to each and every one of them.  To have people who get what it is to live life in such a limited way, to understand the chronic illness and the emotional turmoil that comes with it.  THANK YOU so much for this - I cherish each of you enormously.

I also have two very special local friends who I met when Tara first started at her new primary school in Derby several years ago now.  These two friends understand the girls issues, my emotional needs and are incredible - they also arrange to see me as and when I can, accepting late cancellations as part of the friendship and making plans very close to home so that if necessary I can up and leave and be home within 5-10 minutes.  Liz and Rachael (and hubby Mike) - thank you so very very much - I cherish your friendships.

My focus in life is to promote and help the charities I believe can move biomedical research forward and a glimmer of hope and promise for a better future for sufferers of M.E.  I fight for understanding, awareness and the psychological and physical impact it has on sufferers and their families/carers. How it is a huge life altering event and you are taken on a journey often beyond your control - mostly just coping and dealing with life on a day to day basis.

Thank you to those who have stood by us and continue to support us.