Hi Everyone
I have APS and various other health problems but recently have been having trouble leaving the house. My main reason seems to be fear of taking ill and i seem to have lost all my confidence. I wondered if anyone else had had any problems, thanks
Hello.
I'm sorry you are having this problem. I haven't had it myself but hopefully others on here will post their experiences soon.
Dave
Hi has any particular thing set it off? I think most of us catch everything going, however have you got a best friend or good friend you can confide in, or relative? It would be a good idea to buddy up with somebody for a bit and do short trips that end with something nice even it only a coffee somewhere? If you can't shift it you may need to talk to the GP, but the fact that you are aware of it probably means you want to tackle it. Keep in touch, we all help each other on here. MaryF
Hi Mary I think what started it was becoming unwell when i was out on my own and having to depend on strangers to phone an ambulance . Some just passed by thinking i was drunk but eventually a very nice lady helped me.
I have spoken to my gp and am starting councelling on friday
Good on you, you are strong and brave! Things will improve for you. MaryFx
I wonder if you have problem with your balance?
I had a lot of neurological problems before I started warfarin. But after warfarin when I am enough anticoagulated and my blood is thin enough I feel ok.
I have always a mobil with numbers to relatives etc and I also have got a card from my Hematologist with my illness and who is responsible for me at the hospital. Ido not go out in the forrest by myself nowadays.
I must admit that I have sold my car because I had doublevision and my flight to Costa Rica in 2002 was probably my last one. I am 70 and I like Stockholm and the surroundings very much.
I try to take a fast walk every day as I feel fine afterwards. When you have APS your body likes to exercise. I can understand very well if you feel afraid to go out though.
Best wishes from Kerstin in Stockholm
Yes I do have balance issues I have menieres disease and also partial deafness which makes it difficult to communicate with people
Hallo again,
I have read that 3 years ago you thought to ask your GP to have a referral to St Thomas.
I sounds as if you have a nice and gentle GP but I insist that you must see an APS-Specialist about all your symptoms. Have you had a visit to an APS-doctor?
The balance and the ear is connected. I can very well understand that you are afraid to go out. No wonder at all! Please try to get a doctor who knows what to look for.
We have all found that when we have met a doctor that at last give us the correct treatment, take the right bloodsamples etc we can live a rather normal like.
I do want you to have a normal life again and to be able to go out again.
Where do you live? Look at hughes-syndrome.org
My very best wishes to you and that you find that doctor!
"Various other problems"? I did when I was much younger. I also had experienced sensory overload and ended up reclusive. Many years ago. May I ask what other health issues are? As Lure said, if those are neuro related, then it's understandable. You are not alone.
Hi I have menieres disease, Lupus and severe osteoarthritis which makes it difficult to walk
I found out I had APS after a stroke, and had audio sensory overload in busy places - probably due to stroke, but could be the APS, and it took a while to get used to going out. Underlying this though was the fear that something would happen again. I feel better with mobile phone on me etc, but also having a medic alert bracelet gives me reassurance that if I couldn't tell them what I had they would still know. It also helps to know that of something did happen people tend to want to help - certainly what happened when I had the stroke.
I too have had this problem before, but my kick up the bum was the fact I have a young child, who needs to experience the outside world. I always wear a medical identity tag stating my name, the condition I have, and that I am on warfarin. In my mobile I store contacts with ICE (in case of emergency) numbers, which let anyone who finds you know who to contact first. My little girl and other family members know to show people my anticoagulation book, which contains all my INR readings. The way I look at it is, that if something happens to you at home, your less likely to be found until it's too late. If your out and about and something happens, your more likely to be found and treated a lot quicker!
I hope you find the courage to get out and about soon! Start with little walks around the block, and gradually take things further as your confidence grows. Sending you lots of positive vibes, Sally x x x
Hi-sorry you're going through this. How long have you had APS? I had a stroke on March 1st and was dx with APS then. I live in the heart of New York City and it took me quite a while to get over the fear of being alone in my apt (am a widow) and then to get back into traveling on public transportation esp the trains. I stayed with my daughter and family for almost a month barely leaving the house, however, as suggested--I took short walks frequently then longer ones, walking through the fear-got on the trains and buses by myself and esp was frightened walking down long train platforms to wait for the train. Everything was "new" after the stroke and I just took it one step at a time. I pushed myself and am now even back at the gym (at 68) which I took very slowly. The only thing I haven't done is travel long distances and am still fearful of flying--another hurdle but am confident I will. It's actually taken me approx 9 months to feel "normal" and to feel like I can lead a normal life now even though I totally lost my speech and have gained back 90% of it. My advice is to take baby steps--like short walks, etc. and increase slowly according to how you feel. I wish you the best.
Hi Loretta,
I am also back at the gym. Afterwards I will this Thursday try "Medical quigong". My youngest daughter was delighted that I should start that so I guess it is good.
I heard on the news this morning that you are going to have a "snowstorm" (the worst in100 years) up to 90 cm of snow. I guess you are well prepared and take care of you go out then.
Kerstin
Thank you Kerstin. I am on my way to a stretch and relax class this morning as they say the worst of the snow will start later in the afternoon. I went out shopping yesterday and will stay home tomorrow and make chicken soup and get things done in the house that have to be done that I neglect running around so in the City. We have the streets plowed almost instantly and hopefully it will not be as bad as they say. My daughter lives in Long Island they typically lost electricity and she has 3 little ones so I hope that doesn't happen. During Hurricane Sandy, I had the kids for almost two weeks because we never lost electricity. be well
I was diagnosed in the early 1990s
I can relate to what you are experiencing.
You can try small things like firstly just go out in the garden and potter about. Take the rubbish out to the bin, go to visit a neighbour or to the local shop if you have one.
You like cross stitch, is there a craft group you could join?
Do you see a specialist at hospital, if so they can refer you to Health Psychology who can help you with this.
They can help you work to which fears are realistic and then come up with ways to deal with them.
The confidence loss and fear of taking ill are likely related to your experiences but it is possible it could be directly related to your illness, so your consultant and GP would be a good place to start.
Keeping the mobile phone with you when you are it is definitely a good idea, and make sure the important numbers to call are in the phones directory.
Also look at what makes you feel worse in the short term.
I find that being on my own too much and spending to much time dwelling on my problems makes them seem worse than they actually are. So I try to regularly do things that are completely different from what is health/illness related. Otherwise it can take over.
Its a process: First comes finally getting a diagnosis and validation that all our often bizarre symptoms are not "made up" but due to an identifiable 'thing:": APS.
Second comes getting an effective treatment (we're all different and sometimes a med that works for a while becomes less effective and must be changed out to something else.)
Third comes restoring the internal, mental definition of self and adapting our behavior to accommodate this gob-smacking revelation that we are "sick for life" in the most positive way possible. I too was nervous about going out in the weeks and months after my diagnosis. Physically, the warfarin had banished the headaches and mini strokes. But mentally -- I was scared.
From my experience I can suggest -- take baby steps. With each trip out, with each passing day, you will grow more used to this new self definition.
And talk to your hematologist. I asked mine about which pursuits were advisable and which were not. We agreed I should eliminate: skiing, mountain biking, white water rafting. We agreed I could (and he emphasized SHOULD!) continue hiking, kayaking, canoeing (flat water) and rail trail and country road cycling.
But that doesn't mean I could bring myself to get back on the trail immediately. It took me some time. First -- half mile loops with friends. Then up to 2miles. By 2004 I hiked the West Highland Way with my best friend from high school and our daughters (thats me sitting on a well-placed rock on Rannock Moor.)
I have confidence you will adjust. Be kind to yourself. Consult with this site as often as necessary. Read up on Hughes, as well as life with chronic ailments in general.
And again, start with baby steps. You will get your confidence back. It does take some getting used to this new definition of yourself.
Gina in West Virginia
Hi
I can completely relate to what you have said. I am not sure if it is my age (50) or the fact I now have a grandson but I keep thinking about death! Never have before, but now I get paranoid and even more so since my mother who has dementia has also been told that she has Hughes. I look at her twiddling her fingers and think god that's what I do, also with my terrible brain fog and memory issues it makes me worry more!! I could quite easily stay indoors and sometimes have to force myself to go out. I have lost alot of confidence too. It would almost be helpful to find other people in my area to chat with and meet for coffee but Eastbourne seems pretty low on others suffering with APS!! My family just take the mickey out of my ailments and call me a hypochondriac. I too have a medi alert bracelet, my husband insisted on me getting one. I go to the gym and swim but sometimes I prefer to be on my own or just with my husband as it feels safer!! Silly I know.
Yes I never go out with one of my family I had a stroke in February last year and they found out I has APS I have not been good since then then ended up in hospital againe just before Xmas thinking I had had anther stroke it turned out not been one they say all Simtons but going to do more test I feel if I go out with no one with me if any think happened to me when I am out on my own so I never go out with out my family in less I realy have to
I can really sympathise with this as I've had a similar problem for 14 years and I'm now 44. I try to avoid going into town or anything more than a 10 min walk on my own, as I get panic attacks and worry that I won't be able to get back home! The chronic fatigue has played a big part in this, as I feel weak and tired quite quickly. What helps is meeting up with a friend, I have something to look forward to when walking alone x
Hi Geraldina,
I know you were on warfarin but your INR was not steady at all. You started warfarin 1/2 year ago.
Did you find an APS-Specialist because I think your symptoms should improve a lot and it should be easier for you to feel safe in town if you were enough anticoagulated .
Best wishes from Kerstin in Stockholm
Hi Kerstin, thank you for asking, I'm seeing Dr Cohen at UCH in London and she's very good. INR still a bit wobbly, but headaches much improved. Still having trouble with fatigue, esp after work. Mind you, teaching special needs In a primary school is very exhausting! I have to lie down for an hour or so when I get home. UCH think I may have lupus and I've been prescribed plaquenil which has helped joint pain a lot
Gerri
I can understand that. I know a person working with childen with special needs and she does not have APS. I do not know what UCH is but I guess your doctor knows APS.
I can only hope that you will have the possibility to rest also. Is it possible for you to reduce your workinghours? I know it is difficult when you are working in a school. Talk with your doctor. Tell her about your fatigue. We are very sensible to stress. I admire you for what you are doing.
My very best wishes to you!
Kerstin
Visual problems
speech problems
About vision problems
Heart problems and APS
Memory problems
