I want to take this opportunity to talk about my husband, my soul mate, my rock.
We have been married for 12 years this year but have been together for 20+ years. We even went to school together but the spark did not come until much later.
Often in my struggle to see any positives in my life I forget about how my illness affects those around me.
When I came back into contact with Sean (that’s my husband by the way!) we were both involved in a local Carnival Club. Anyone who has ever had any connections with Bridgwater will know about the world famous Bridgwater Carnival.
Back then I was “all in”. I would work hard to fundraise for our club, actively take part during the year building the Carnival Cart and the set used for a two week stage performance called the Bridgwater Carnival Concerts. I even was made Club Captain at one point and was extremely proud to be able to lead the club in the best way I could.
It was during an evening celebrating with the club that we became an item so to speak. The rest as they say is history.
When Sean asked me to marry him I felt like the happiest woman alive. He even proposed to me in my favourite place in the world – St Ives in Cornwall.
I often look back at our wedding photos and even though it was an extremely happy day it also makes my heart break. ME hadn’t raised it’s ugly head then and I look at photos and see the true smile and love beaming out at me. I was happy then. I had a life ahead of me then. I had a lot to look forward to…then.
In 2015 everything changed. All my hopes and dreams changed as ME came knocking.
I have always said in my posts and in life that everything I say is honest, everything I share is my story. It pains me but I often look at Sean and ask why is he still here with me? Why is he putting up with this way of life? He didn’t “sign” up for this!
Simple things that people take for granted I now cannot do and therefore Sean has had to step up and either do it himself or arrange for help from others.
I can no longer take my children to school, physically do a food shop, walk into town, drive my car, “pop” to the shops, have children round to play, clean my house, go to school parents evenings or any events concerning my children – that is hard, very hard. These are just a small list of things I can no longer do and I have had to rely on Sean to sort.
We were lucky enough to have 2 children by the time that I had ME. I cannot imagine the pain I would be in if ME had come before that time and that I was unable to have children. My children and my husband are my world and I will be forever grateful to them all. I know many women with ME aren’t so fortunate. They did not get the chance to have a family before they had ME. They have had husbands and partners leave them because they simply cannot cope with living with someone who is chronically ill.
My husband is not a “talker” when it comes to emotions (men often aren’t I know!) and he often bottles up his feelings but I do believe that he has become better at expressing how he is over the years. He keeps things to himself but my one wish is that he would speak to someone – not a professional, just a friend. I have a hard time dealing with this disease but where is the help for partners? Their world was rocked at the same time, their dreams were dashed and lives changed too. They have to watch as a loved one is in constant pain knowing there is absolutely nothing they can do to help them. How awful is that? Imagine how that must make someone feel and how they then deal with that every day.
Just stop for one second from reading this and imagine that….
Everything you thought you would do with your life has had to change
Plans cannot often be made, dreams cannot often be sought
In my view, it takes a certain kind of person, a special person who often doesn’t know their worth as my husband doesn’t. He has to always think everything through if there is something he would like to do for himself -who will be at home for me, who will look after the children, what if I am really ill and he cannot get to me, how will we know how I will be until the day?
When life seems really tough I have said to him to leave me, why would he want to stay in this life, why would he put his life on hold just for me when he could be living it how he always planned but he just gives me a look…a look that says don’t be so stupid, my life is with you and we are a team. We get through it all together.
It is hard, very hard, but I will be forever grateful to him and am so glad that he is in my life. He supports me in any way he can. He comforts me when the pain is too much and the tears start to flow. He stands by me through it all and helps me to raise awareness of this soul destroying disease.
Yes I have this horrible disease, yes my life has changed and I hate every second of it but I am lucky, lucky that I have someone willing to share that life with me. To hold me up when it all gets too much and to fight it all every day.
My husband, my soul mate, my rock xx