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Posted in Personal Blog

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.


  1. I`m one of those friends in your `virtual` world. I have never met you but I don`t need to in order to know that you are an amazing person and devoted to your family. They are lucky to have you. I too have lost friends and family from a former life but all the kindness, help and support I have found in it`s place makes up for that loss. I think we all have days when grief overwhelms us. You are not alone that`s for sure. Thank you for sharing so honestly and openly how you feel. I hope you are feeling a little better since writing this xxx

    11th March 2014
  2. Thank you for your comment – I am so sorry that this applies to you too. I agree in that having our children and loving husbands is a huge comfort in times like these. Sending you my best wishes for days ahead and the comfort that we are not alone in these experiences xoxox

    3rd March 2014
  3. Feather I know that you understand, your friendship is hugely appreciated and dear to me. xxxxxx

    3rd March 2014
  4. Anonymous

    Thank you for sharing this, so much of what you have said applies to me. I can understand the trauma of looking after a child, researching treatments knowing that nothing would change the outcome. Seeing people avoid you, not just friends but family as well. Always tired, never truly happy. I do have friends and family members that have and will always be there for me but many that will not. It is somehow reassuring that I am not alone, that there is someone else sharing the same thoughts. I too would like to be the person I used to be but part of her has and will always be lost. I feel fortunate that I have a loving husband and two other amazing grown up children and those friends that were with me at the most traumatic part of my life will always be there.

    3rd March 2014
  5. Anonymous

    This is Feather :)! Reading this was so emotional, but there's something powerful and beautiful about it too.

    I feel sorrow sometimes for the friendships I had before M.E…some have kept in touch in a periphery way, and its always good to hear from them, but they're not there for the tough times. They don't reach out to me when I relapse, they don't try and cheer me up or ask to phone me.

    Without our amazing clan, I would be so alone. Its a shocking realization to understand that these people we loved and still love, just can't understand.

    I'm so sorry your friends stepped back when you needed them to step forwards most! Xxxxx

    2nd March 2014
  6. You kind words are appreciated and I am sad that this too has been something you have faced yourself. Wishing you many better days and I have taken comfort from your response, perversely it helps to know that I am not alone feeling this and that we are not bad people but our situation is misunderstood. I do feel that for many people they cannot comprehend what it is like living like this and so turn away because they don't know what to do. Whereas those who live closely with this illness fully understand and can support in ways others can't xoxox

    2nd March 2014
  7. Thank you for sharing this. I think all of us with M.E. go through these kinds of losses, and we just cope the best we can. I was thinking this morning of a dear friend of mine I had been friends with for twenty years when I became too ill to meet her out for lunch. I had had no idea that our friendship had consisted almost entirely of fun lunches spent talking and later shopping. But when I got too sick to do that, she disappeared from my life. She could not relate to me as a sick person. The end of that friendship was outside my control, like the end of so many other friendships.

    I, too, am glad for the virtual friends I've found since I've been sick. In some ways, I am closer with these people whom I have never met in person than I was with many of my real life friends before I got sick. I think that is because they know aspects of me and my personality that my real friends never even guessed existed.

    I wish you comfort on your more difficult days and health for your daughters soon.

    Patricia Carter

    2nd March 2014

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