An article written for a local organi... - Hughes Syndrome A...
An article written for a local organisation encouraging people to be more active including those with disabilities.
Inspirational story - thank you for posting.
I try to exercise daily, it helps feel focused, improves circulation and generally gives a feel good factor.
xx
I agree I’ve always done it & despite my brain injury I’m so fortunate to have kept my cognitive function...was so frustrating to start tho as I knew what I couldn’t do. Exercise & eating well is as important as any med I think. ‘We’ have to help ourselves to help others & get help I strongly believe. Too many rely on others both professionally & personally in my experience anyway. I appreciate the reply.
Thank you for your article to help others understand how important it is with exercise and also the right food to keep well.
Especially as I know you are on Warfarin (food important) and at present with the higher level near 4.0 (is that right at present?)
Exercise, right and healthy food and Warfarin, steady and rather high can make us feel much better on our own.
Exercise is also important to make the pain we have reduce.
Best wishes from Kerstin in Stockholm
If you can selftest it is easier to follow your INR. I feel well at 4.0 and I selftest. Good Luck!
Kerstin
I do now after attempting to obtain a self test machine for 15 years!! The rules changed a couple of years ago, so I’ve had one for about this time...hooray! I send result to local dosing clinic where any doses are modified. Generally I’m fairly stable although my dose came down quickly but uniformly about 25% recently as I deliberately lost around 10kg in weight
Hi again,
I guess you have read here about the doubletests with the vein-test results. My machine-values are always higher than the bloods drawn in the vein at the hospital (within 3 hours time between the two tests) .The differences should always be the same and it is the vein-value that counts.
It can have to do with the fact that I am Lupus Anticoagulant as then it can be difficult to keep the INR in the right place.
Kerstin
Yes I’m aware thank you although I was advised to stick with self test results for consistency rather than altering doses if switching between self & vein. After my major incident I was attending my doctors for vein blood tests weekly as stipulated by my rheumatologist my arms were becoming a mess & my concern was that my veins would give up eventually as well as not looking very nice!
I have done a lot of doubletests before I started selftesting.
When I test at home I may have an INR of 5.0 and then I know that I have 4.0 in the vein which is the correct INR. Then I withdraw in my MIND 1.0 (as the difference is always 1.0 between the two methods) and I live with an INR of 4.0 that special day.
I have always a greated difference if the INR one day is too high.
I know that we are all different though and i am Lupus Anticoagulant, but it is important to do the doubletestings before starting selftesting.
Kerstin
Thanks, I am so pleased that I exercise daily, it is hard and sometimes I have to break it down into several 10 minute sections, or two half and hour sessions, but day in day out, I do this, plus healthy diet and supplements, I think I would be far more ill if I was not trying to do this and sticking to it. MaryF
CAPS is rare but as you explained, can be deadly.
Your article was erudite and explained to people who do not understand, or even have heard of this chronic disease, what it is and how you overcame CAPS.
An inspiring story.
With good wishes,
Ros
Thank you. I raise awareness of Brain Injury, APS & Addison’s whenever I can. Being honest my understanding or should I say ignorance before was the common one. I guess you wouldn’t know or look to know unless directly impacted in some way. I am looking for further opportunities to raise awareness and am more than happy to.
Danny
I think this is very common: when something happens as in a disease, this has a profound impact physically and psychologically. In 1998, I approached Dr Graham RV Hughes, who was my consultant rheumatologists about putting St Thomas' Lupus Clinic "on the web" which is what happened. I designed and hosted a website dedicated to lupus and St Thomas' Hospital, London.
In 2000, (a long story), I started LUpus Patients Understanding & Support (LUPUS) to provide free information and free online psychological support for people affected by SLE, lupus variant conditions and the antiphospholipid antibody (Hughes) syndrome. Psychological support is especially important because this is rarely offered to patients - unless they present with "distressing psychological" symptoms who are sent to a psychiatrist! There are those who refuse to admit that psychological support is necessary because at least partially, it is seen as a "weakness" rather than an ordinary and "human" response to a trauma. While it is sometimes necessary for medication, often psychotherapy is far more appropriate, but this requires a specialist knowledge. Sadly, the NHS is about economics and mental health is at the bottom of the list. When I was eventually diagnosed, I became too ill to continue as a teacher, so I retrained as a psychotherapist.
HU is filled with people who "suffer" from a wide range of medical conditions and who have turned this traumatic experience into something positive, as you have done and are doing.
Be well!
Ros
Amazingly my consultant recently told me that by pure chance (or whatever else you may say!) he’s been involved with 9 cases of CAPS whereas even once is extremely rare...we discussed survival rates & the reported stated improvements...he didn’t seem convinced informing me of the 9 only 2 survived....me being 1 of them. Now that’s a very scary & humbling statistic. I’m shocked myself at times I’m here as I developed brain infections that are life threatening & couldn’t be treated as normally because of my impacted kidneys!! Chicken & egg situation. Something was looking out for me!!
Read your story Danny.You truly are inspirational. ..such a fighter.
I love hiking...I am out in nature and like to see different places.For two years thou with normal months in between I have fought back to return to that love.Last year I thought I would never walk normal again and get out of the wheelchair.I am determined and although short hikes I love them ...maybe not at times during as exhausted but I know my limit.My sisters try and modicoddle me try and persuade me not to incase I end up violently jerking and falling with my trippy walking.Alot if time I hold onto my husband.Thing is it makes you feel good having control of your body by exercising.It makes you feel in a better state.
I am now going to read your story to my husband and know he will say WOW too.
Stay well now.
I have been wondering for a long time, whether it is safe to really try and do heavy weights on warfarin. I am female, 60, and overweight and it doesn't take much to be considered heavy to me, but want to do it because it is supposed to be necessary to maintain health, isn't it, and also because perhaps if I could had some muscle it is supposed to be easier to lose weight. Good to hear that you were able to come out well from CAPS!
