Sticky Blood-Hughes Syndrome Support
8,093 members8,330 posts

I do love half term!

So, I've got a week off at last, I love half term. I'm enjoying it so far. I don't want to whinge, I'm fine and happy and well enough at the moment and off to visit a friend in London for a few days.

Recently I've had days where I just don't think any of my family or friends understand. If I'm tired, they tell me to do more exercise. When I forget, or can't put a sentence together, they tell me that everyone does it, I'm just getting old. When my joints ache. I should lose weight. One friend even went so far as to spike my drink with vodka on a recent trip (after a long flight with aspirin etc) because he thought I was being miserable. I'm terrified of something happening to me but because it's not visible, it's like it's not real.

I know that they all care massively, I just wish I could make them understand why I've convinced myself that a pain in my bum cheek is a dvt and not from overdoing it at a wedding on the weekend (that monkeyman song = monkey dancing).

So maybe it's me. Maybe I should put these things to the back of my mind and put it all down to getting older. Mind over matter and all that. Hoodie up, run up some steps and in your face antibodies! Back off!

13 Replies

Hi Sweetie

I made my family read a simple book on the Illnesses that showed the very worse that we can go through Once they realised it was a different story just remember you are a very brave woman whi id fighting your demons you need support to help you on your journey good luck xxx


Thanks, I might give that a go x


hi tann i know exactly what your saying , i have gotten the same from some of the doc s i have encountered, taffy has a great solution there i think ,let me know how you make out my dear . ----------------------- jet


Thanks. Fortunately my dr gets it. I just worry my friends think I'm a hypochondriac, or mental! Haha x


No matter the cause of ourr aches and pains, our brain fog and all the porblems we live with day to day, we have to remember to live every day!

That stuff is going to be there no matter what we do. We can be completely compliant on meds and treatments and still be really sick at times.

Just remember to try to enjoy every day.

I gave up trying to convince everyone, and had a look at me. A really good look. Things are still changing in my life, but I try to be happy, enjoy the moments big and small, and remember that so many others never have a tomorrow so I need to make mine count.

My advice? Don't sweat the small stuff, live every day and each day do one thing for yourself. Try to chalenge yourself when you can, take a few risks- in life, in love and in everything else. Make sure your loved ones know how important they are to you.

We are all born termnal, and its really the journey of life we are on, not the final deatination that matters!!

Chin up chickie- we all know bad ones. I am here with a lovely clot in my left lung at the moment. My biggest adventure today will to bake a chocolate cake, if I can muster the energy!!


Good advice, thank you. I make sure I appreciate the wonderful people and things around me, as well as the funny things that happen everyday. Working with teenagers certainly makes you laugh! x


I do the same!!! With teenagers its either laugh or rip your hair out!!

Hope you are having a good week!


hi tann- you look awfully young , working with teens im sure keeps you on your toes!! unfortunately if you look healhty- at times feel ok ,dont have any limbs falling off , than your ok in some peoples eyes, taff said it true teach them to read!!!!!---- best of luck to you my dear ---------jet


Thanks... I'm 30 which is why the "you're getting older" argument annoys me haha.


Hi Tannyah

Welcome to the group i hope you find the information you need and the support you want, you will find that we are a friendly bunch and happy to help with any support or rants you may want to have or do.

We have all been through this issue of getting people to undertsand how this illness effects us and that you can live your life in fear, but as you have read from the above post as long as you are anticoagualted and seeing the right docs you can live your life. But you need to feel comfortable and accept that you have this illness it does not matter in the first place you need to look after you and ensure you are ok then help your family and friends to understand what your limits are.

One of the major things i always pass to people is the below link which was a letter written to help people undersatnd some of the things we are going through and a number of people found it useful


There is alaso a number of booklets and information that i can send to you again they help with basic info and help family and friends to understand.

Rememeber you are not on your own we always here to help and support you.

let me know if you want the more information



Thank you :)


Thanks for the support everyone. I had a nice long chat with a friend yesterday. I explained everything, how I feel somedays, how I get scared etc and she was fab about it. I think I may have been too flippant before so that no one worried. This place is excellent though, it's great knowing there are people here with excellent advice, so thanks. xxx


well hello youg lady?? its good yu got chance to talk to friend, paddy has good info , enough to keep them reading for awhile!!!! and educate at same time!!!!- i teach saftey for our state fish and game - my classes can exceed 65 or as small as 20 - age group is 12 to 105- now thats old !!! ha ha -keep talking dont let it get you down ---------------------- jet


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