I was just typing and noticed how bad my livedo is today - it isn't painful in itself, but it is a good indicator of how I am generally feeling. The more prominent the livedo, the more tired, fatigued and foggy I feel - I haven't looked at my knees for a few hours, they are going to be really bad if my hands are bad!!!
Here is an image of how livedo looks, it isn't painful, just a bit unsightly - especially in the summer months when you want to wear short sleeves!!!
I would say, apart from the pain issues of Hughes, the worst thing is the fatigue and the word finding problems. Not being able to think of the name for something and have your 4 year old finish your sentence or your 8 year old laugh, because you are in the middle of telling her off and no words will come out!!!! is very very upsetting, annoying and depressing. I am a sales person, talking is what I do best. I was examined by a neurologist the other week who was asking me the component parts of my watch - 3 different bits of it I just couldn't think of the words for them - winder, hands and buckle!!!
Many Hughes patients actually think that they are either going mad or are suffering from early on-set Alzheimer's - not funny!!! I do laugh about it, other wise I would cry, it gets embarrassing, I am much better at writing what I want to say sometimes - this blog is very therapeutic!!
Night!
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