How active were you BEFORE lupus?: - LUPUS UK
How active were you BEFORE lupus?
Please select one:
Before Lupus I was a single parent to 2 young children, I was a cub scout leader, worked full time and I didn't own a car so walked miles every day. i went camping, loved the outdoors, hiking and swimming 40 lengths.
Now, I haven't worked for over 10 years, some days can only walk to the toilet and am lucky if i can swim a width or two.
Before lupus i was single, working full time, and out doing stuff round London every day and nearly every evening.
Now i'm lucky if i manage one outing a week -- mainly: Food Shopping at the local Morrison's.
I was working part time for a while, but not able to work at all, this going on a few years.
Boy has life changed.
I was diagnosed with Lupus and Fibro approx 2000 and 2001 approx and worked on until 2010 until finally being forced out of work due to bad attendence. Sometimes if you "fight" on too long it can do you more harm than good as I found. I think these chronic conditions make you re-evaluate all aspects of your life but hopefully with the help of family and friends you can find the positive side of life and learn to take a new view on your situation. You learn to be a Lupus/Fibro patient not a sufferer and find that life can still be good .
Before I was diagnosed with lupus over 20 years ago I was a PE teacher so was involved in sport every day. I also played hockey, basketball, tennis and cricket at club or county level. I gave up my job when I had my children and as my illness progressed, with the additional diagnosis of APS, I became unable to participate due to fatigue. My symptoms have got worse over the last 2 years, this year being in hospital on 2 occasions . I struggle to walk now and have used a walking frame and now crutches when I am out.
A friend mentioned yesterday that she and her family had been on a 6 mile walk. How I wish that I could even walk 100 metres unaided !!!!
It saddens me to think how much my life has changed!!!
But I will walk without the crutches, when I'm not sure, but lupus is not going to beat me!!
Before I was diagnosed with Lupus I was incredibly fit, healthy, active and never sat still for a minute! Since Lupus.. and now Fibro too, my life has changed drastically! No longer do I swim three times a week, go to the gym every day, do exercise classes, have three jobs (1 f/t, 2 p/t) and young children! My life now is based at home.. mainly on the sofa (on the good days when I can get out of bed), I rarely go out, never manage a supermarket, can't even manage to work part time and sometimes it's a real effort just to talk! How very different life has become! I hope a greater awareness of these conditions can be created so people become more compassionate!
I answered the poll by assuming that it meant to cover physical activity but it would have been good to take into account the total level of energy spent overall. I, for example, have not been physically active but my job was very demanding and stressful, so I was working at high levels of adrenaline every day, without ability to rest. High levels of adrenalin (usually used in fight or flight situations) for long periods of time may trigger an immune response or increased immune activity.
Before my current flare, I worked 20 hours a week in a busy hospital (plus 16 hours a week in my Mum's Butcher's shop), Up until the age of 16 represented my town in Long jump, High Jump, Sprinting, Relay. Also regularly played netball, basket ball, hockey, tennis till I had my first child in 2002 & did an aerobics class once a week as well as regularly doing athletics & swimming up until 2 years ago. Oh, plus I went dancing like a raving loon quite a bit. I look back now & wonder how I ever found the time, let alone the energy 2 do it all. Ok, maybe I won't get back up 2 THAT standard again (I AM 34 so getting a bit of an old bird 4 clubbing now!) but I'm going 2 go back 2 swimming once a week this month & take it from there.
So far it seems the more active we were , the more hit by the lupus we r. Maybe something in that :0/
Hi Sher , like you l was a spots fanatic since being a child, was in every spots team in high school, had 5 children, ran my own business and worked long hours 7 days a week and for relaxation l owned 2 horses and rode most days and did all the mucking out and caring for them both. So gone from being extremely strong and fit to being more or less housebound and never able to work again. Miss my old life so much 
It's sad isn't it? Must admit though that I try 2 look back & reflect rather than pine 4 what once was, otherwise I'd b on a total downward spiral!
Hi Sher 78
We think Ive had lupus most of my life so im used to being tired though have had an active life in spite of it I have a lot of pain with it but its been part of my for so long Ive made friends with lupus and do daft things like talk to my discomfort I get very sick with (vomiting)I dont find it at all easy to live with happy new year Judith
Hi, before I had lupus, I worked alternate 5 then 6 days a week, to keep the mortgage going. I used to do a lot of walking also, over the hills, and in the countryside.
Now I work 3 days a week, and find walking any distance difficult, I tried to get over a sty, the other week, which I used to have no trouble with, but I couldn't lift my legs to get over, I had to laugh, but I just wish I had my freedom back to enjoy a walk.
Still as I said, I have to laugh, as what else can I do. (Certainly not get over a sty, that's for sure, lol)
It saddens me to read how your lives have changed....but I see fighting spirit in there as well 
Think my immune system was weakened by a scald when I was 8 years old, I can recall the doctor telling my parents the shock might compromise it. I spent 3 months in hospital, 2 skin grafts. For years my mother told people I had a "poor circulation" she didnt know any better back then. Had white finger, shortness of breath and remember feeling tired easily at a very young age.
I worked as a student nurse in the 60s, early mornings and struggles to stay awake on the bus to get there for the morning shifts at 6am. I never woke feeling refreshed. Then my first child was born in 1968 and I never felt better, I was so focused and sleeping well. Gave up work, second child in 1974, still feeling good, I shifted furniture, painted and papered my home, ran the home by myself, didnt go back to work as I was a single parent by then.
Sciatica set in in the late 90s and that was the start of health probs that restricted my life style (such as it was) with severe pain that had me laid up for 2 or 3 days at a time and I have a small scoliosis mid spine, seen on x ray and advised by my gp and physio to stop doing any heavy work...so no more moving the wardrobes and china cabinet around. I noticed the fatigue when gardening. I had a hand mower and couldnt cut the grass for more than 5 mins without needing a rest..ridiculous and very depressing, I got so fed up. My gp suspected RA and treated me with an antiflammatory, which in turn caused internal bleeding and surgery where they found an ulcer. The surgeon said never ever take antiflammatories ever again and I havent. That was in 2005. A locum sent me for proper testing in 2005, came back positive for SLE and I was given plaquenil which eased the tiredness but it never really goes away. The rosy red cheeks I had, that my mum thought was a sign of good health, must have been Lupus flares way back when as I didnt feel particularly healthy. Spring cleaning, which I loved, is a thing of the past as is painting and decorating Short walks are all I have now and online shopping. I can potter round the house but darent push my luck....its the fact that choice has been taken away to go and do whatever I want that hurts the most....
Before lupus I loved to dance and shake my groove thing, I loved to play darts and see my friends on a weekend. I loved making dance routines with my neices and I used to go abroad twice a year. Since lupus I don't do any of the above, now me and my husband go on weekend away but sightseeing is difficult, bacause of fatique and feeling tired.we go places like Scotland instead of sunnier climates for two weeks a time. I miss them days but now Iam retiring at 47 I am hoping to get back to or dream of weeks in the sun and playing darts again the dancing well I can only dream.
Luppychick
Quite difficult to answer really as I had lupus for a long time before I was diagnosed. Even now I am learning of things which affected me in my early 20s as being linked to lupus. I used to be convinced I was lazy - but not I know that was not the case. Now I try to do as much as I can but recognise that I have limits!
I was really lucky 2 b born with it lol & although undiagnosed 4 the first 16 years, I had a lot of problems with joints, tendons, muscles, ligaments etc, chronic fatigue, anaemia (which they always passed off as strains, sprains, water on the knee, torn cartilidge etc because of the amount of sport I did). I STILL managed 2 remain really active after diagnosis & a stroke, I only stopped when I went in2 a severe flare 2 years ago so in 1 respect I was very lucky 2 b able 2 carry on with things as long as I did :0/
Hi before Lupus I looked after my 95 yr old mother who lived 30 mile away, I went daily and did everything as well as my own shopping, cleaning etc. I also looked after my son who has severe anxiety and depression. Now I am stuffed. Oh well love you all
Before i had Lupus, i worked with special needs children. It wasn't hard work, but it was heavy. Some of the children had to be lifted. I adored working with them. I also cared for my disabled mother for many years until i could do it no more. I got worse and so did she. I used to love doing DIY. Painting, decorating and tiling. I loved using my hands.
It grieves me i can't do these things anymore. It saddens me that i have never been able to pick my four grandchildren up since they were babies or sit on the floor and play with them.
I know it may sound hard to believe but I am actually more active since being dxd with Lupus. 21 yrs ago all I did was struggle to cycle to work come home sleep, hubby would wake me for dinner then i would sleep again. After a year of this I said enuf is enuf. I took myself in hand did an exercise instructors course and I would drag myself up to the free gym we were allowed to use at work. I was on 6 different drugs incl steroids, told I would b on these for life. That was like a red rag to a bull. I became well enuf 6 yrs after dx to come off ALL meds and stayed off for 14 yrs. In that time I have run over 1,000 miles a year, cycle, sea swim( in summer) gym and teach exercise to over 50`s and special needs.Oct 2011 i was also dx with Lambert eaton a very rare auto immune. I spent 6 wks in hosp I was put on IV/IG drip and 8 other drugs. I lost one and half stone (all my muscles) dissapeared. Lems disease means the message from brain to muscle doesnt connect. scary I actually said my goodbyes to my husband on day 9 in hosp as I thought I wouldnt make day 10. But hey. Day 10 they gave me the dx, i had all the cancer scans as lems usually means cancer is present. all clear, i was also offered help tp fill in disability forms, red rag again. less than 3 months later I was back running. and 6 months later i did my first race a 10km.month after that i did 1/2 marathon for Lems, and in oct 2012 i did my 13th marathon. Oh I am now down to 2 drugs and being weaned off as I cant stop either suddenly, but hope to be drug free in the near future. I want to share how I have managed all of this to help others. I wont say it was easy folks, far from it. and it involves lifestyle changes, diet, exercise relaxation etc. but no gimiks. I dont see why anyone cannot do what i have done. So I am trying to find someone who will publish my book (all proceeds will go to Lup,Lem,Ray) So please dont let the wolf get you down, you too can fight back. Big Hug to all x
I,ve had lupus since I was 15. It was not as bad then and I seem to have collected diseases over the years as a result of my lupus. However, I'm still here and also have 2 teenage children.
im 19 was diagnosied june 2012 i was traing to join the armed forces so was out trying to push myself at the gym running etc camping i also enjoy but even with having lupus but now i still go out on my bike but not as much and find it harder than i used to but i wont bow down to the lupus never
reading this reminded me of a comment made by my brothers neurologist around 9 years ago who commented that he was seeing more and more young healthy fit people struck down with ms it may be good to suggest research into auto immune problems and a correlation with fit healthy people, funnily before my flare I had become a fitness addict running at least 10k per day and cycling anywere upto 70 miles per week.
I was diagnosed 2 years ago, up until then extremely fit, 5 children , ran my own catering business working long hours 7 days a week. For relaxation used to ride my 2 horses and take care of them . All changed now, can't work anymore and horses had to go as couldn't manage them anymore. Miss my old life. Have tried and tried with all sorts of exercises to regain some level of fitness and strength but nothing works - just makes me worse.
I was a professional singer and and actress. Autoimmune disease ruined that.
Before lupus I worked over 37 hours, did at much overtime as I could, went for long walks did the gym and had a social life
Now I'm stuck at home off sick hardly able to walk down the road and have no life
Before lupus I was very active, cooking and cleaning and baking and doing crafts. Now I can not even sort out the washing and fold it up.
Before lupus I could decorate half a house in a day and run rings round everybody and needed very little sleep
