Kronically Kayt

Relationships with chronic illnesses especially ones that cause pain are fucking hard. (Least in my opinion) Friends tend to fall by the way side for the most part. Their busy “normal” lives seem as alien to you as your pain filled life does to them I guess. If, like myself, you are unable to work, somedays can get very lonely. Suddenly a chat with the butcher about the weather, meeting someone on a dog walk, the checkout person in Tesco almost seems like a proper conversation. Nights out become so much hard work that you are lucky to get out 3-4 times a year (at least that’s me) and afterwards it can take 2 days to get over it and that’s without even drinking alcohol. If I do drink it will be for 3 days or so. Family members can be tricky too. I’m lucky in that my family are so supportive and caring but that in too can be kinda hard because I hold back a little for fear of worrying them not wanting to add to the constant level of worry I know they hold on to since I firs...

Doctors........ It's so hard to get a good one. I had a great gastroenterologist when I was first diagnosed with Crohn's, Professor Gleeson, who unfortunately retired about 2001. Since then I hadn’t met my new specialist only a series of minions of hers. Until this year 2017 and when I met her I cheekily said “It’s nice to put a face to the name”. Hehe However in 2012 when I was there the doctor asked if I was stressed or worried about anything and I mentioned that I was getting married the following year and was nervous about the day and my urgency issues. His answer to me a thirty odd year old woman was "Why don't you wear an adult nappy (diaper for any Americans out there)". I was disgusted. Where was his empathy or caring? I said nothing and got up and left. When it comes to my Fibromyalgia I met one lovely rheumatologist whose name escapes me right now, he was the one who told me I had Fibromyaglia. After that I saw a rheumatologist that spent t...

Everyday is completely different. Planning for events, weddings, parties etc is damn near impossible. The best you can do is give yourself two to three days of almost complete rest before hand and even then it’s not always enough. Sometimes all the rest in the world won’t help. You wake up and you just know.... you feel it almost as soon as you become in anyway conscious. Maybe it’s the pain creeping it’s way inside you leg bones, between your shoulder blades or maybe it’s the fatigue draining you like a vampire. You haven’t even gotten up yet and you are already dreading the day. Dreading the shower and getting ready, traveling and that’s before you even begin to factor in being a person. By that I mean talking to people, trying to listen to them and interact in a real way while inside you are in agony and repeating in your exhausted head “ when can I sit, when can I go home, will I lie and say I am fine?” Then horror of horrors you realise they are st...

My body is a cage And I locked inside Peering through the bars To the things I could have done If it weren't for this prison of flesh. Every second is pain Every minute agony Every hour, Every day knowing it will never stop Never You cannot understand what it takes from you. Steals your joy, Your hope when you need it most. As I fade I try to remember me Kayt 

What I mean... When you ask me how I am and I say "Ah the usual" or "Same old same old" I want you to know what I mean. I mean there is pain, there's always pain. From the moment I wake up till the time I fall into a restless sleep there is pain. And it's not just pain in one area it's everywhere, everything hurts but it's at a level where I can leave the house, go to the shops go to the gym, meet you for a drink etc without breaking down. That the fatigue isn't so bad that I can do nothing, I just need to pace myself. When you asked me how I am and I say "today is a bad day" I want you to know what I mean. I mean there is pain and I can barely handle it. I mean I have probably cried already today and will again with frustration, anger, pain and exhaustion at the fact my own body does this to me for no reason. I want you to know I have wished for a switch to be able to just turn off everything; have imagined cutti...

Do you ever stop hoping to wake up well? Does it ever get to a point when you don't wake up and feel that near grief in the pit of your stomach? I honestly don't know which is worse, having that hope or losing it. Rationally I know there is always pain. 24-7-365 The levels vary but the certainty of the pain begin there never changes. Does it ever end? Kayt Jan 2018

So a little while ago I was having quite a hard time coming to terms with the good day/bad day stuff. It was hard to remember the good days when the bad days got in on me and hard to remember things I had accomplished and over come when it came to my anxiety issues when all I felt was pain and frustration. Then it came to me. Light bulb moment! For my first wedding anniversary which is paper, I had got a jar and filled it with 101 things I love about my husband....... Cheesy huh! Mega cheesy yes! Well I started to think why could I do that for him and not for myself and that's how it started. My mom being my mom gave me a pretty Duiske sweet jar rather than the jam jar I was going to use. The first thing that got added to it was the first trip I made to Belfast to see my Neurologist on my own which was a huge thing for me the two hour drive on unfamiliar roads and then back again with little to no panic. I add to it as often as I can even if it some...