Friday, 24 January 2014

My First Post Of 2014...

Happy belated New Year everyone!!!! 

Very late with that one. I apologise for neglecting my blog for the past couple of months but I hope you all had a lovely Christmas and New Year, wherever in the world you may have been and I wish you health and happiness for the year ahead.

I'm actually quite nervous for this new blog post as I feel I've lost my flare of finding something to blog about. So many times I have thought about deleting this blog over the past few months, I'll be honest. I get a little voice in my head telling me that it was a ridiculous idea putting my struggles online for all to read. But then I am reminded by some great people in my life (the few who know I have started this blog), that even though people may not always get in touch with me, in being open and brutally honest in how I deal with my own illness, I may be helping others to feel not as alone if they are going through something similar. It is still a worry of people finding this who wont understand and be incredibly quick to judge or mock, but its a risk worth willing to take knowing how difficult it is to deal with a chronic illness when you are young.

I have had a quiet couple of months as I find the time I most struggle with accepting my new adaption to life of being chronically ill is the week of Christmas to New Year. Although this struggle usually stays up until my birthday in March. I find myself being on major life reflect and unable to get into the festive or happy spirit whilst coping with my pain becoming worse and worse each month that passes. My mum and dad both kept asking me what I would like for Christmas and all I kept wanting to say was, "just health please". I hope in 500 years people can actually buy health, how fantastic what that be!

 I've come to realise that health really is the source of all happiness. It affects everything in your life from your family life, social life, working life or school life to how happy you feel everyday. I can honestly put my hand on my heart and say for the past solid 5 years there's never been a day where my pain hasn't been a 7 or above on the pain scale. I wish I could preach to people and just tell them how fortunate they are to not have to cope with the stress and worries of being ill everyday, for them to appreciate being able to do so much with their lives. Even little things, like not thinking too far into a trip out.  They would probably think I'm crazy because luckily not everyone has an illness curveball thrown at them and would forget to appreciate how blessed they are with their health.

At Christmas I always become extremely quiet, I don't really like talking to many people because I feel I will bring them down with how I am feeling. I always fear I will be seen as ungrateful or miserable because its so consuming trying to cope with pain especially when so much is happening around you. With pain being invisible I find it hard for those around me to fully understand why for the past few years I never seem to enjoy special occasions, not matter how hard my family may try. I am extremely grateful for all of their hard efforts, its just that pain overrules any feeling whatsoever. I wish there was a switch in my brain that could fake me being happy around this time of year as its really all I want to be, but it just doesn't happen. I dread answering the phone to distant relatives and them asking me, "Are you feeling better now", because having to say no I'm not kills me inside. I know that life is very precious and I could be seen as ungrateful for not making the most of life, but it is highly difficult whilst being in pain and struggling everyday to get through it when its hard to see the light at the end of the tunnel.

 I see Christmas and New Year as over thinking and analysing what I should be doing in life compared to not managing to do anything with life because of pain. I entered 2014 feeling much worse with more pain and to be honest haven't left bed much. I am pretty sick of staring at my bedroom walls even if they are painted a nice colour! When I finally make it downstairs I feel I've run a marathon and had a hectic day, whereas in reality I've only managed to have a shower. It is pretty miserable not seeing daylight whatsoever sometimes because pain is draining you. It is really difficult trying to get your head around not being able to join in with things people your age are doing around the festive season. Like going out for new years eve, or going shopping in the sales. That might sound silly but everything about my life revolves around EDS. EDS decides when I able to get out of bed, walk downstairs, have a shower, sleep, if I can walk that day, how bad my mood is because of my pain etc.

So as we are fortunate to enter another new year, it is tinged with worry and sadness about how much more debilitating my condition is becoming. I feel unfulfilled starting the new year worrying how much worse I may be in a few months time, if my life follows a similar routine as the previous 5 years. Social networks on new years are full of peoples resolutions and goals for the year ahead. When I see these I always feel like I have nothing to aspire to because of my health stopping me. But I found myself making a list of the person I would rather become in 2014. A few of the things on this list are, how I'd like to
. Find more genuine reasons to smile more
. Make my mind stronger to cope with my illness
. Try to enjoy the rare occasions I manage to go out
. Try not to let negative thoughts ruin my day
.Stop comparing myself to other people who are not chronically ill
.Less stressing

I'm hoping and praying 2014 is kinder to not only me but to all those suffering with a chronic illness. I also hope whatever journey you may face during your illness that it makes you a stronger person.


  1. Hi Nancy I just wanted to thank you for sharing your feelings.
    I discovered your blog in my son Georges "favourites". Unfortunately George chose to keep his feelings, the severity of his pain and his "worry list" to himself I guess he did this so as not to upset us, we knew his pain was bad but I don't think I realized how bad until I saw your first blog. I'm so grateful to you for starting your blog so that George found someone he could relate to I'm sure it must have been a help and comfort to him to know that he was not alone with his feelings.
    I know you have seen the report of his death I just wanted to let you know that the inquest proved the report ( and indeed what we were told at the time ) to be incorrect George despite being depressed and feeling suicidal with the pain never gave up he unfortunately had a huge heart attack.
    I wish you all the best and I hope that you can continue to keep smiling and letting your friends and family in on how you are feeling.
    Thank you once again, much love Jane
    P.s Please tell your Mum that I loved what she wrote in November

  2. Hi Jane,
    I can't tell you how grateful I am to hear from you. I hope my blog has not upset or hurt you in anyway. I had the pleasure of emailing George a few times last summer and he was so kind, caring, honest and polite.
    He confided in me some of his struggles so please be reassured in that he wasn't bottling everything up and that he had some sort of outlet to open up to. Going through illness, we know that our families love us, but we also know that they will never fully understand the problem. So telling them everything will only make them worry. I often keep how intense the pain is to myself because I don't want to frighten anyone. I promise you, he didn't want to put the extra stress on you all. I was extremely thankful for his honesty as he helped me realise I wasn't alone and made me realise this blog was worth doing.

    Regarding George's inquest, I have now changed my last post where I mentioned what the report from an online newspaper stated. The truth is still incredibly sad, but I am so glad that this wasn't correct as it made me feel devastated. In all honesty I blamed this blog for making him feel worse and the situation more real.

    I often think of and mention George to my mum. No words could possibly be the correct comfort for you all. I hope you find the strength to cope as well as you can and I am incredibly sorry. You will always be in my thoughts. I wish you lots of love and all the best. Thank you for your kind words xx