Kronically Kayt

Sorry Ive been quiet but I got busy in the last couple of months as I started writing a “book” though god knows it if will ever go anywhere but its been good for my brain to keep it active. It all started from a dream I had which was very odd and very detailed. Maybe when its done ill post it on the internet. At present I’m at 20k words :) didnt know I knew that many :P Health wise i was doing pretty well after my hernia surgery in November, well as well as I get, until the last couple of weeks. I found out I have a 18mm kidney stone which is going to take 3 surgeries to sort out :( and developed Reynards. First in my arm and hand then my feet. Possibly from a folic acid tablet i was prescribed  time will tell. God I hope so cause that stuff is painful! Ill try to be better at updating this blog now i bought an actual keyboard for my iPad. A pressie to myself for my 40th b day last week.........40!!!! Take care X

Now for some of the weird symptoms of fibromyalgia I experience apart from the general pain and fatigue issues. Parenthesia - this is a prickling, burning or an itching sensation. The one of these I experience most of these three is the itching. Sometimes it's a normal itch or more usually what feels like an itch on the back of my hand which I then try to itch but it's not where my brain is telling me it is. So I end up itching and itching but getting no relief. Worse one is when it feels like my brain is itchy! Dropping things frequently- I am ridiculously bad with this one. I drop things ALOT but some days it is even worse and I drop EVERYTHING. Difficulty speaking known words - Yup! All the bloody time. End up trying to explain the word I mean. Aka Door "the thing you go through when you walk into a room" while moving my hands about in a door type movement. The hubby has my sign language figured out! Allodynia - this is a hei...

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...