How has lupus changed your life?: - LUPUS UK
How has lupus changed your life?
Lupus Has changed my life i can,t do many things activities that i used to enjoy it sucks to be in pain all the time.I feel lonely.
I was always active before my diagnosis, running and kickboxing. I thought I would have to quit which filled me with dread. Now, I am more determined than ever to keep going with the hobbies that fill me with passion... There will come a day I cant do those things, that day is not today ;0)
It would appear that the severity of Lupus governs the impact it has on your life. Reading the blogs many people seem to be able to continue a near normal life. When the illness is severe ( I was left with breathing problems) it affects every aspect of your life. Nine months ago I was fit and active today I can only walk a short distance, I am unable to excercise and have to depend on my husband to help me.
fully agree with your comments. Having been diagnosed 2 years ago, the biggest problem i have is unrelenting fatigue. On bad days its huge effort to get up. cannot go out. Have just had to claim ESA as my employer has paid SSP for 6 months. I think there comes a point where, as well as "fighting all the way", its important to recognise your own limitations. Easier said than done , i know. Having so far been determined to work i am know facing dismissal on not being able to fullfill my contract. This is mutually agreeable between myself and employer. Still is hard to take. Prior to diagnosis i worked full-time , then reduced hours to 20pw , which i still found very hard. With hindsight i know that friends/familly were right and i wasnt coping. The whole focus has been on working no matter what and everything revolved around it. Even a 20 hour pw job.
Would be interested to hear other peoples experiences. I worked in the pet department of a busy garden centre. Have always been active, previously served 12 years in RAF. Looking for the right balance between chronic fatigue and natural, "contented" tiredness. Consultants refferred me to physio to try and improve stamina. Have read on quite a few bloggs about people having sudden bursts of energy and getting lots done in that time. Thats me too but still havent mastered pacing it.
I hear you.It is hard to stop pushing especially if it has been part of your ethos,in sports,work etc. If you find any good tips on pacing ones self plse let me know.
I have to use up my energy bursts as trying to pace myself does not work, I either have energy or I don't regardless of whether I've rested or been active. It's like having a light switch which my body independently turns on or off, if I don't use up my energy while I have it, it just seems to be wasted as the next day I might be tired again even though I didn't exhaust myself the day before. I don't work because of the fatigue mainly, I could not cope with a job and raising two children on my own - I'd collapse. Wish you all the best tho, you have to find your own way as we lupies are all unique. xx
I agree whole heartedly with beckside and kevmc1. I too was very active. I worked full time and enjoyed kick boxing,driving my bike,body toneing,riding,skating etc etc basically anything that took my fancy. I worked with glass.i also drew and enjoyed learning crafts. When i started to find these things diffucult I did try to tell various gps(i moved house a lot so moved surgeries) but as i became distressed and found it difficult to verbalize these probs i was basically ignored or treated like a hypochondriac. This led to my believing that i had just somehow become lazy and deluded even when i went to carry a sheet of glass and just couldn't i thought some how it was my fault my weakness "all in my mind",so i pushed and pushed myself untill both my mind and body collapsed. Even though i now (20yrs on) unterstand the words,i have a chronic illness i still somehow feel my inability to do stuff is my fault and they tend to make me feel that way at the hospital. I am terrible at pacing myself and it has never been discussed at specialist apptmnts. I no longer say much at apptmnts as i find it more than difficult to talk to docs now.
I have had lupus since I was 12 and I am 45 now, so I don't really remember what it was like before I had it.
I must admit that before I had Lupus I was alot more active, and now I am not. However, because of my religion, being one of Jehovah's Witnesses, I have a much brighter hope and I am not saddened too much by my ailments. Don't get me wrong, I am on dialysis now as a result of having Lupus, and struggle with joint pains and lethargy, along with other ailments, but keeping my mind focused on more positive things helps me to stay positive. Lupus is not the only thing in my life, and I refuse to make it the centre of my life. It is a part of me , and that's it-JUST A PART- not the whole. I also reason it could be worse. So I am happy that I am able to have a positive outlook and it also helps with the control of the illness. Have positve friends and family and do positive things.
I have had lupus for what seems like forever! Diagnosed finally at age 16 but was a sickly child and has a dx of ITP at age 9 and subsequent spleenectomy. Looking back, my life has always been 'restricted' because even then, as a child, I was tired and sun sensitive. I am MUCH older now and recently am starting to live my childhood/teen/adult years which I missed 
....LOL. Have been through there and back with this dis-ease of the body but like Tammie said, I have never let Lupus be the only thing in my life. Lupus and I have to both live in this body! It is only now that I am experiencing another side to life - still sun sensitive and tired but aware and managing myself.
I had been sick for most of my teenage and early adult years before being diagnosed last year at 26. I'm happy to have lupus because now I have an illness - I'm not just depressed or a hypochondriac or just lazy. I have a genuine illness and but I wont let having lupus define me
Hi its my first time on site hello everyone. fell ill in my late twentys sixteen years on after being told had nash now to be told I have lupus and Other illness but still waiting to be confirmed as lupus i suffer fatigue, pain,dry eyes, dry mouth, memory loss, nausea,very sensitive to sunlight it has really changed my life is it the same for everyone.
Lupus together with my associated auto-immune conditions has completely turned my life on his head. It has changed my work life, my social life, activities and interests I used to enjoy.
I have always been quite independent but poor health has made me dependent on the health service.
It was a potential contributor to the ending of my last relationship.
These days I only make plans that can be changed without causing too much hassle. Everything depends on whether I am feeling ok enough on the day. As such I socialise a lot less.
I prefer to spend time communicating on forums these days as it requires much less effort than other types of relationships. And unless you make people aware, they dont treat you as a patient, meaning many of the goalposts are removed.
Thank god for the internet.
I choose the "I'm still active/healthy" option, but I wanted to clarify: I had some bad times but I got better. At some time I couldn't even drive, but now I have a full time job. Lupus doesn't define me.
I feel very isolated and alone as I don't understand this disease very well as it has many ups and downs
I have great support but lupus has been live changing for me. Not in a good way.
nobody understands its totally debilitating the pain is horrendous and the fatigue is so demoralising x
