I'm not one to complain... but...

I had to share this here, after writing it up for someone who is doing an article and asked for information on how KT affects me, I actually found it amusing that I live with it daily and it's only when you sit down and write it out that you realise what it is you have to put up with. I am sharing it to try to give an idea of why this is so important to me - I don't like to complain (and I think I rarely do) - I love my life, I get on with my life, and having listed all of this, I realise why I sometimes find it difficult to keep going!

How KT affects me:

- Right leg and pelvis affected by visible malformation (port wine stain, swelling, excess lymph tissue and dilated blood vessels. - I have always worn compression to help the blood flow. - As a child, I had laser treatment to stop the leg bleeding (outwards) - As a young teen I had sclerotherapy to stop bleeding into the knee joint. - In 2002, aged 14 I had a permanent colostomy formed due to haemangioma in the bowel - Following that surgery I developed DVT in IVC (inferior vena cava) which was broken down with heparin and a DVT in the portal vein in the liver – too old to break down so still blocking the portal vein, causes portal hypertension (high blood pressure in abdomen) which causes varices (extra blood vessels) to form to carry the flow but they form in the oesophagus and bleed into the stomach causing irritation and vomiting blood. - On warfarin for life to prevent further DVTs and superficial clots, but must be careful due to already being prone to bleeding. - Varices are treated (by endoscopy and banding) annually now but used to be monthly. - Daily heavy pain in foot and lower leg from poor blood flow (blood vessels and sensitive tissue underfoot make it painful to walk). - Daily joint pain in ankle, knee and hip. - On and off pain in back/side from enlarged liver/poor bloodflow. - Haemangioma/blood vessels surround gall bladder causing pain akin to gall stones, but no surgery available due to the high density of blood vessels in the area. - On Norethisterone to stop any periods as when menstruation started it didn’t stop and I bleed HEAVY. At 13/14 years old I bled heavily for 18 months constantly before finding medication that worked. - Chronic Fatigue and poor memory caused by pain, medication and just a symptom of the syndrome. - I'm anaemic, and go for regular intra venous iron top ups (intolerance to iron tablets) - I get dizzy spells due to poor blood flow and anaemia. - I suffer regular infections such as Thrombo Phlebitis and, more commonly, cellulitis. These spread like wildfire through compromised tissue and often land me in hospital if not hit heavily enough with strong antibiotics. Today, as I sit here writing it, I *think* this is everything but in all honesty, I will keep remembering odd little bits! I never sit and think about everything that is wrong, I deal with it as I go, so I may well have missed bits. I hope this helps to explain why I need so badly to have a normal life with my dogs, to be able to walk them using mobility scooter (if I didn't have my dogs, I'm not sure I'd get out of bed in a morning!) and why this dance group is something I love so much - even though it's far from ordinary, it does deliver some normality for me!