Are most people unable to work with APS - Hughes Syndrome A...
Are most people unable to work with APS
I work part time and im exhausted. Although i still have two teenagers at home 
I work full time, but I'm also exhausted. Do not know how long I can carry on x
I work part time in the week and all day Sundays plus im a single mum of tqo. I am tired most of the time. Its like hitting a brick wall with tireness, I think unless you don't have you don't understand. My housework has suffered and my kids don't help as much as I want them too.
I drop off to sleep on the sofa after a short shift at work and long shift and im in bed before the kids.
My daughter has a worker for her behavour and they keep harping on about the housework, it gets me down because they don't get as quick as I tidy up my kids make a mess to the state I just don't want to do it as its effecting my health.
Think in some respect you need to be looking from the inside not the outside as they normally do. Never judge a book by the cover alone I say, read more into it.
Yes I had to take early retirement. Memory really bad, no energy etc, had to fight for it though. I am lucky, I have a Husband who supports me, I am not sure i could do it on my own.
I am only 29 and I don't have any children. I only found out I have Hughes after three miscarriages and the only other symptom I have are migraines (at the moment) and I work full time. I also am a Parish Councillor and so have several evenings out a month for this and my husband and I share the chores.
I personally have found exercise great at making me feel better and have more energy. Even if I feel washed out and exhausted if I force myself to go then I always feel better. I also need to stay well hydrated and eat regularly or I may as well just go straight to bed. I keep a bpa free water bottle on my desk and make sure I drink two a day approx 1.5l.
My mother however works part time 8-1 and then comes home has a sleep 2-3 and then is fine for the evening. She can not miss her sleep in the middle of the day or she suffers terribly for several days after. Wuzzy head, aches, pins and needles, muscle twitching etc.
I think everyone is different and you need to find your own balance and take rests when you need to. Experiment with what works for YOU. I think it is so true that unless you experience it you can't understand it. I struggle sometimes even with my mum as I forget how poorly she really is as she never complains just sticks to her routine and is not swayed by others opinions.
Hoping you find your balance soon xx
I work full time, running my own Building Surveying practice and I also conduct a choir, once a week, and sing the services in various cathedrals monthly.
I try to get out cycling as often as I can, for pleasure these days, but I used to race up to 100 miles.
I am much better on Fragmin than I was on Warfarin and it's much less hassle too, no blood tests, or worrying about what one eats or drinks.
Best wishes.
Dave
I stopped working because I was too tired to work and keep up the house. My husband had to help a lot with the household chores. Now I can work doing household chores at my own pace. My husband and kids benefit from me not working. I very much miss the social interaction at work.
Jean
We are all different. I was diagnosed with Hughes when I was 46, but I now know that I had lupus during my teens and Tweens ( ANA was positive then, now negative.). So I have a life long experience with that fatigue. Again, we're all different and we all need to experiment and chart how best to manage it, but for me, personally, f I force myself to exercise-- even if it's just doing some arm curls with a weight while watching TV-- if I di enough to get a muscle burn feeling them the fatigue is reduced.
My housewife, English magor's theory thinks this has something to do with exercise releasing hormones.
I worked 20 hours a week(3 days) with an hours drive to and from and managed only because it meant I had a long weekrnd to recover. When Lupus was diagnosed as well as Hughes I had to 'retire' at 52 as I couldn't manage any more.
I'm 26 do 16 hours a week I've had to cut down on my hours and change my job role. Find it very hard to cope and when I get home can't do much as tired. My partner also ill so we do struggle but have to work to keep our flat as don't wat to be on benefits.
I am self employed and work at home with my hubby. He is very good and understands and does a lot
However I am still exhausted and cannot sustain any physical work. Housework is so hard as my arms are very weak and I am in pain every day. Trouble is we have a very big house as there were 5 of us once and now it is impossible to follow.
I also have a very lazy teenager still at home which makes my life harder than it should be.
I'm 51 and the peri menopause is also taking its toll on me.
My stress levels are high right now and I am getting chest pain and shortness of breath. All I dream of every day is my nice cosy bed.
I am currently working full time as secondary school teacher and have done even after dx in 2010 however I have learnt that in order to preform at my best I am going to have to go part time. So it is with a heavy heart I will be reducing my hour at the end of the summer
Everyone is different and looking ahead going part time will allow me to carry on doing to job I love far longer than staying full time and at 31 that important to me.
Working patterns and Hughes is such a difficult thing to manage , and can take time to work Orton a personal level
Clare
I work full time as a rehab consultant for the Industrial Commission... I come home and go to bed early my sweetie fixes dinner two to three nights a week and serves me in bed... I'm 55 and my 7 kids are raised I have 21 grandkids so there is still plenty to do... I also have SLE. take care and remember One Day at a Time. I pay for long term disability insurance and have used it from time to time... Good Luck and lots of Prayers.
I have 2 toddlers (so thats a full time job right there!) But I have started doing some admin work for my brother, just when I can. But when I do do it ... i have notice it taks a bit for me to recover! Last weekend I did 4hrs straight, in the end my husband made me stop as he could see I was in a lot of pain. It the took me 3 days to feel ok again. So in those 3 days, all I could do was lay on the couch due to the pain in my joints and being so tied. I don't know if I could go back to working full time and have your employer understand APS!
I am 49 next weekand have had APS since my early 20s (although not diagnosed until about 15 or so years ago). I work full time and I swim about 10,000 yards per week. The physical exercise makes a huge difference in my energy level. A lot of times I don't feel like swimming but I force myself to just drive to the pool and get in the water.
After an hour of swimming (sometimes it feels like I'm just dragging myself across the pool), I almost always feel much better. I sleep better at night after exercising, and I feel more energetic the next day.
A healthy diet and a good amount of exercise makes a huge difference in my overall health and energy level.
Hi
I work full time as a Programme Consultant in London (the commute is 1.5 hours each way on a good day) on top of that I walk the dogs every morning for half an hour (although I am running again now), a full hour walking in the evening. I also go to Zumba once or twice a week and play Stoolball for my village. At the weekends I ride horses and do the gardening - oh and catch up on the housework. In my 'spare time' I read books on psychology and happiness - I'm thinking about enrolling with Open University to get another degree. I am 32 and I live alone so there is no one here to help me. That said my family and friends are terrific supports and most the exercise is with a friend so it's a social thing too. I honestly don't know what I'd do if I wasn't flat out all the time. I am genuinely concerned that if I wasn't busy I would fall over and not get back up...
We all deal with things differently, I deal with mine by fighting everything for the life I used to have (I was diagnosed at 19) but now I think I am far more active than I have ever been and I am really happy with life in general.
Take care
Tx
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