WHAT ABOUT OUR FAMILIES HOW DO THEY COPE

Hello I was diagnosed April last year and my condition went catastrophic between xmas and new year. My family are struggling sometimes trying to deal with the condition and it affect on me. I would like to hear from partners and family members to see how they cope....THEY ARE IMPORTANT TOO...big hugs to all and their thier families............Mysty

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  • Hi Mysty

    My family says that they understands but they don't has it is hard for them as what we have is an ilness that we have to come to terms with.

    I do get some support one days and my wife and family says that I am making it up and they don't seem to understand how I feel.

    Just think that there are people on this site knows what you are going through and there thoughts are with you and you can come here and rant as every one understands you.

    Take care

  • it is soo hard my husbond has a bad time trying to deal with hughes.. and i have it bad.. dont have enyone to talk to about it.. but i have a great doctor and he lis

    ent to me..it is hard to live with hughes..

  • am 71 first found out i have hughes when i was 52 had a blod clout in my brain and was paralize down my right side put me on warfarin then after three montha took me off of it then had two more clouts it took then along time to find out what was wrong as her in denmark they know nothung about hughs i also gave it to my daughter hoe much better it is to have a doctor that knows what huges is al about

  • Hi this blog might help hughes-syndrome.healthunloc...

  • hi mysty - that is quite a quick change from, primary or secondary - to catastrophic , as far as i know very rare occurrence. if i may ask? where did the other problems arise, and to what extent. if you are uncomfortable with anwersing i understand. welcome to our group, you will find warm careing people here always here to help , talk , maybe help with some answers, or share an expierence,, ------------------------ jet ps where are you from ?

  • Hi Jetjetjet, I have had migranes for as long as i can remember. I have had several unexplained miscarriages. Since the mid 90's i was being treated to an "unexplained" blood clotting disorder. In 2007 i took ill and was diagnosed with 5 dvt,s in the abdomen and 1 in each leg. They then told me I would be on warfarin for life. Since then i have had numerous headaches memory loss, vision issues etc. In April last year i was driving to work and had to turn back and I ended up at my husbands work with chest and shoulder pain on the left hand side and was pretty sick and to be honest terrified. I was taken to hospital by ambulance and eventually they came up with a diagnosis of sub clavian dvt that compromised blood flow to my arm. I was discharged on warfarin with a theraputic range of 2-2,5. I then get sicker and sicker and by chance i had to see a GP who was not my usual. He looked at my notes and put all the pieces together, I had had border line Lupus test results and I had turned into a medical anomoly. The doctor thought outside the square and checked me for hughes....i had 3 different results.....1 negative and 2 positive. My symptoms were as he stated textbook book hughes. So we changed my inr levels to 3.4 and I started to feel a lot better than I had for years. In December last year he ordered an MRI and the results showed that I had had multipile mini strokes..more than 11. In between xmas and new year I woke one morning with a pounding head ache and i was bleeding from my bladder.....my inr was at 2.6 the day before this......over night i had had a blood clot in my kidney and i was bleeding terribly from my bladder. I required blood transfusions and a reversal of my warfarin as over night i had gone from 2.6 to 6.9.......so....it may seem like a quick change but i have had this condition for years with no diagnosis......now i am weak......tired...achey.....terrible memory......vision getting worse....inr wont stabilise and i now have two clexane a day and 12mg warfarin...............the part i hate the most is the headaches and dizzy spells which we now know as being micro embilis.....

    Im in Western Australia.....but born in New Zealand...been here 4 yrs.....thats my story,,,,,,

  • Hi

    I wrote a bit of a blog on this a while ago - hughes-syndrome.healthunloc...

    I always think it must be hard to be totally supportive of me as I often don't know how I want to be supported and also because I am constantly living in denial so i can continue with my life...

    Take care

    Tx

  • Hello, yes it does have an impact on family members, they sort of understand but sort of dont. You have to put some effort in to explain a lot of things so that they know everyday is different for you. My hubby took a while to understand, it did take a few arguments thought ooopppss.

    My advice is to have a list of things you need to do, prioritise the list and then try not to do everything in one day....so the list rolls over to the next day, you prioritise again according to what is going on. Try to share the list if you can so that communication improves between your family.

    Take a break, I find that even 15 minutes lying down makes a huge amount of difference.

    Go to bed very early some nights, your body just needs sleep to keep going!

    Thats all I can think of right now

    Sara xx

  • My husband finds it very hard because he is a Dr and he feels he should be able to cure me. I was so releaved to get a diagnoses, I feel I can get on deal with it and remain very positive and am grateful that I wasn't diagnosed on autopsy. The other problem is that I am also on a large dose of steroids, they have caused such problems, and my face has changed shape so much, that every time my family and loved ones look at me I can see the pity in their eyes. But we will get through this it will take time and life will be altered but, I have had Hughes for many years and I got over these incidents before, yes this will take longer and I am older. I do have the love of family and friends and that is great, and I get lots of phone calls each day because I seem to be seeing a Doctor every other day. But I discussed with a friend that we musn't make my illness the focus of my life and lets try and talk about normal life, I think when they get used to the changed me so much the better for all of us. My in -laws have been marvellous, they are both Dr's in their 90's but still on the ball. In fact he was the one who diagnosed me straight away.

    When I was younger and had incidents of Hughes and it wasn't diagnosed I didn't get the support I have now, it does make the world of difference, but Hughes wasn;t known about then. I had 8 miscarriages and with all that despair, I changed my life, and became a nurse/midwife. Eventually I got married again and long term fostered 3 boys who are now my family and have been so loving and caring, one of them takes me all my appointments because I can;t drive at the moment because I have a blocked vessel behind my eye and can't focus properly also I have become a very unstable diabetic, so its better not to drive. I hope I can keep my positive attitude in the future for all their sakes. This not the end of the world just a beginning of a new one, and try and make the best of it.

  • Hi, All.

    My adopted daughter says that she lives in two worlds, one she can communicate and be aware in and the other where she is alone and totally isolated but aware of everything. She often says that she's drowning in black water and she can't get out.She feels so trapped when this happens and it makes her so sad that she cries herself to sleep at night sometimes.

    I get worried when I see her in such a state, but all I can do is sit with her and hold her hand , telling her that it will be alright.

    She says that when she is "with it"she is aware of me being there but is unable to talk or otherwise communicate.

    I and my wife are doing the best we can but we see how hard it is for her and how it's getting progressively worse.

    We try our best to include her as much as we can in all our "families "activities but she is becoming more and more limited by her condition.

    Soon we will have to do just about everything for her, but we don't mind.

    Hope this helps,

    Wayne L

  • Wayne,

    You and your wife are legendary!!!! I do feel for the families as this condition is so fickle. I can totally relate to the black water.....i to get frustrated by my own limitations as this condition progresses. I would like to say on behalf of all of us how grateful we all are to our families.BIGGEST HUGS TO ALL!!!!!