Sticky Blood-Hughes Syndrome Support

Motivated again to become healthier after recent hosp admissions thank goodness for this site!!

My start In mid jan with personal trainer better eating habits came to a halt after a cruise in feb after losing 8 pounds on a high with exercise my inr back on land was.8.5 despite feeling great

advice of anti cog clinic of stopping warfarin for 2 days - BIG mistake!! Now I'm back in charge after 2 hosp admissions docs lack of understanding & several Tia's I feel my neurologist is a huge support & is willing to support me testing my own inr's-


1. Started slimming world after Easter was slimmer of the week--- got a long way to go need to lose 3 stone but taking small steps....

2. Latest health scares involved ecg changes scared with chest tightness with slightest exertion for first couple of weeks has now resolved I walked my dog when I felt able to building up length of walks & now I'm ready to return to the gym. Tomorrow first app & I can't wait to get on that road of fitness improve my resistance to fight the fatigue & educate my brain to re in gage with my fibro muscles ;-)

Off work for a while not sure what my future job wil be as being redeployed as current job to stressful working on the wards really want a research post but my main saying is you can't expect anyone to help you unless you are prepared to help yourself hence need to put myself in a healthier place and just hope no major blips are in my way will only worry about that if it happens tho! Another one of my sayings only worry about something if it happens ;-)

Please join me if you feel you are in a place where you need to kick own ass & get back in the driving seat love to all Kathy

PS also have applied to go on deal or no deal watch this space xxx


8 Replies

Good on you, it is hard to be fit and healthy with what we have. I have Lupus, Psoriatic arthropathy, sjogrens and Hughes alongside Hypothyroidsim which made me put on extra weight. For years, I have maintained a healthy diet, and physio wherever I can... I know it is a bore, but i don't nibble between meals unless fruit or veg, or dried fruit, and fast food is a no no, as are ready meals...I know this is not easy for everybody... and things loaded with sugar like cakes or chocolate, once a week! and once a week only. If I go away from this, ie staying with somebody who does not stick to this sort of regime... I am much worse, simple as. So good luck with your quest, a woman after my own heart! Mary F x


ps: I hope you get on that programme x Mary F


Thanks Mary, you have been an inspiration to me you are an amazing person very strong always supportive ;-) you should apply as well kxx


Thanks x


Well done for yur strong will to keep fit, even with hurdles that got in your way.

I know I try to get to the gym at least 2 times a week, but I know I've put weight on again since last year....trousers a little tight :(

Its very frustrating as I dont eat a lot & the joint pains are really bad at mo' but I still try to do what I I wish it would reward me with less 'bulges!!'

Good luck with the tv programme, keep us posted! :)

All the best & we'll keep fit no matter what hey?!!! xx


I am with you!! I woke up this morning at 5:30 am to get my butt in gear and to kick this thing. I am bound to eat healthy and do it right. I have two beautiful little boys I am so grateful for and changing my eating habits. I am being realistic. No crazy dieting, drugs, etc. Just good old fashion working out and eating the right things. Will have my moments I am so sure but you know what. I realize at this point I have a bigger goal and thats to be HEALTHY.

I am with you and so glad to see your POSITIVE energy. We need more of that.



Go Heather ;-) like everything we all really know what we should eat & do etc etc and for the healthy specimens like many of my friends they struggle to keep on track at times.... and then there's us hughies with more obstactles than one can list but we are a high spirited bunch!! and very determined... i think we all deserve a pat on the back ;-)

Easters out of the way - unless your gorgeous boys got some left of course Heather ;-) so we can all get back on course...mind u glad i am strong willed at mo sainsbury had eggs 70% off omg that is my weakness chocolate esp eggs !! but i did take an instant left turn and dashed my trolley up the fruit & veg section - phew i made it none had accidently fallen into my trolley!!

suzy those trousers will soon be loose on you hun but i completly know what you mean with all these naughty joints of ours - just back from walking the dog both feet are aching and calfs but hey ho warm shower coming up - i find the warmer the better if im aching...

Personal trainer was kind to me today think i scared him off when i mentioned the left weak arm & leg - left bundle branch occlusion etc etc my bp and pulse was good i said im fine honestly weakness all resolved now but he was taking any risks but i feel safe in his care....

Off for that warm showers speak soon love to all kxx


I hope your programme is going well and they you feeling the benifits of it, keep up the good work



You may also like...