I wrote this post before Ste went into hospital, over a month ago, and had it sitting here for all this time. I feel like now is the time to share it. As anyone following my blog will know, Ste was admitted to hospital after we visited his amazing gastro doctor as he was rapidly loosing weight and not absorbing his enteral feed. They have got him sorted and not only stabilised his weight but he has also already started to gain some too. I know making the decision to turn to his doctor was tough, as it was almost certain to lead to an admission while they decided what to do next. He hates being in, hates being away from his family and not getting to see Layla and the boys as much as he wants to. But this decision was very brave and one he made as he knew something needed to change, otherwise he may have ended up in a much worse position. As the post states, my inbox is always open. We recently lost a lovely member of the IBD community. The link between chronic conditions and mental health is very real but unfortunately not always well supported. Please know that any of you can turn to me if you need a chat. Unfortunately, chronic and mental illness struggles do not give you a Christmas break, and we all need to know there is someone out there who will listen, in whatever form we choose to share.
I will admit it, I find it incredibly hard to open up and actually talk about my feelings. I know it drives Ste mad sometimes, as all he wants to do is comfort and help me but I just really struggle with it. I do much better writing things down. And, as part of my blog, I often share these written thoughts much more widely, with people I would never dream of saying anything like this out loud to.
Like me, Ste has Crohns Disease. He also suffers with gastroparesis, short bowel syndrome, has an ileostomy and is fed through a PEG-J tube (since the hospital stay he has now been fitted with a port and is on TPN feeds). I’ve known this since meeting him but recently his health has been deteriorating and it’s the hardest thing to see. The person you love in agony, with such little energy and almost ready to give up.
As I write this I’ve just been in tears with him, finally admitting that I’m so intensely worried about him I can barely breathe. But there are many things I can’t seem to find the words to explain. That I can’t say out loud, and I’m sure I’m not the only partner of a chronically sick person who hasn’t thought these things at one time or another.
1 – WHY ME?
Why did you choose me to fall in love with? Why let me fall in love with you? This is anger but of course, I wouldn’t actually have it any other way. This man has made my life sparkle the last year and I wouldn’t have been without him for anything.
2 – I THINK IT’S TIME YOU WENT IN
Obviously, as I am chronically ill myself, I know you generally reach a point when you know ‘it’s time’. I don’t want to see him struggle anymore and I’m feeling helpless that I can’t help him with his pain and problems, it’s time to let the doctor’s do their job.
3 – I DON’T WANT YOU TO GO IN
I’m scared. What will happen and how long he will be in there? Ste has spent ALOT of time in hospital, his longest stint was eighteen months. How would we live any sort of life being apart for all that time? Even three months just seems like forever. Not a single night where we would be able to cuddle up, birthdays apart, no holidays, no precious time with our children. Selfishly I think about my life. Would it stop? Would it carry on, without him? What would that mean and how would it work?
4 – I WANT US TO HAVE A BABY
Selfishly on my part again, I suppose. I want to share that with you. You are a fantastic father and I want that for a baby of our own. I would love to be a mum again and for us to have that experience together. But it also means that if the worst was to ever happen (God forbid), I would have my own little piece of you to keep me going.
5 – WE ALREADY HAVE OUR BABIES AND EACH OTHER
I feel incredibly lucky we have been blessed with three children between us and we get to share them with each other. Let’s use our time enjoying it with them, and with one another. We get to go on impromptu dates, stay up late watching movies because we can, go off for a night away at a moment’s notice as we know when we have he children and when we don’t. I don’t want to possibly further push our health with a young baby to take care of. I want to enjoy our lives together.
6 – I’M TERRIFIED I AM GOING TO LOSE YOU
It’s the worst thing I could imagine, but when I see you so poorly the thought plagues my mind. How would I ever face every day knowing I wouldn’t see your face again. I wouldn’t kiss you, touch you, hold you and curl up to sleep next to you? It’s something I can’t bear to think about yet, at times, it’s all I can think about. Please don’t leave me.
So there is a slight foray into my head and my innermost thoughts. Heavy going I know, but I’m sure many of you with partner’s who are chronically ill have probably had some, or all of these thoughts at one time or another. However easy to say, ‘focus on enjoying the present’ is, it’s not always feasible to do so. What I would say is, try and talk to someone. Find your support through the tough times. Talking to your partner is great, but it may need to be someone else you admit these feelings to – a family member, friend, doctor, therapist. Even a blogger online whose inbox is always open (I mean me!).
Yes I’m still mad that he made me fall in love with him (not like he really had to twist my arm!) But I will also be eternally grateful for the happiness and joy I’ve felt since I met him. The feeling of contentment, completeness and finding your other half is overwhelming, undeniable and complete sunshine. And I will be here holding his hand (as I know he will do mine) for whatever comes our way next.
You guys are beautiful stars set in the deep blue sky, and I’m grateful to have come across your blog and read this. It puts the holidays- and life itself- in the proper perspective. Bless you both as you move forward. And thank you.
Thankyou so very much for your lovely comment. That really means a lot. Merry Christmas to you and your family xxx
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Wow, this is such a heartfelt post. Thank you for sharing it with us. I’m so sorry to hear about all the heartache that comes with chronic illness but am so happy that you share the truly wonderful moments with each other. #DreamTeam
Thankyou love. It’s hard but I wouldn’t change it for the world, he truly is my soulmate. Hope you had a lovely Christmas xx
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