[LESLEY SCOTT]

Hello, my name is Lesley Scott and I was diagnosed with Lupus 10 years ago now. I have not had any of the major problems; tend to have fatigue a lot; mouth ulcers most of the time and loss of hair at intervals. I do find that my muscles ache a lot of the time and have pains in my legs at night which wake me up most nights. These are now causing problems with my driving. I feel uncomfortable telling those around me that I am feeling fatigued as I can almost hear them thinking "not again", it does cause me not to go out as much as I would like to. I almost feel embarrassed when I am feeling unwell, Is that a common feeling with Lupus. I am showing signs of problems with my kidneys at the moment and that is under investigation. I very rarely take time off work but have had to take 2 weeks off at the moment due to the fatigue. I have a lovely husband who is great around the house, a 15 year old daughter who loves to cook and a 19 year old son who has recently had major surgery on his spine but still makes me a cup of tea from time to time. I am very lucky.

 

[Joandublin]

Hi there Lesley

Welcome to the Forum. Im sorry you are feeling unwell at the moment and I hope that the problem with your kidneys can be resolved as soon as possible.

Your post struck a chord with me because I too have pains in my legs (and arms) which wake me up at night and I am having trouble lately with driving. My legs are the most painful when Im driving. Im beginning to dread any kind of a journey in the car.

You asked if it was common to feel embarrassed when you are feeling unwell. I dont know if its common but its certainly something I experience. I imagine a lot of people here will empathise with that feeling as well. Im just not sure what it is. If I had cancer and felt unwell I dont believe I would feel embarrassed to say it but yet I find myself not telling people that I feel lousy because I feel embarrassed.

Maybe its because people generally dont understand about Lupus and what it does to a person and how it can make them feel? Maybe its the fact that one can be feeling quite good one hour and the next hour can be in terrible pain? Its so hard to explain to people that I end up not bothering but rather make other excuses as to why I cant do this or that. I often tell people I have to work rather than go out with them because I know I couldnt cope with the walk or whatever it was they were planning. I often wonder why I dont just say 'sorry, Im not able for that'

Anyway I just wanted to welcome you and let you know that you're not alone in feeling awkward or embarrassed about this illness.

It sounds like you have a lovely family and I hope your son is recovering well from his surgery.

I hope you enjoy the Forum and if there is any questions about symptoms or treatment, etc please feel free to ask. There is a wealth of experience and information here on the forum between all the members.

Take care for now
Joan:rose:

 

[onetay]

Lesley,
Hi and welcome to the site. It sounds like you have a wonderful family support in place at home. It is nice when the love ones around you do understand that it is a real problem for you. You have a lovely son if he himself is having problem and still wants to help you too.

You are right people do get tired of hearing you doing feel well, but we have all been told that lying is wrong also. I have the feeling that if you ask how I am today then you should be propered for the answer of I am still not feeling well. If you don't care how I am feeling then please don't ask me, or if you don't want to hear not feeling well than again don't ask me. This sound harsh for some people but it is the truth.

I am glad that you have found the site as I have found it to be helpful and supportive in more than one way. I hope you start to feel better soon.

 

[Katharine]

Hello Lesley and welcome

I think we can all understand and have shared your feelings about going out and feeling guilty or embarrassed when you're not well. I suppose it is part of human nature. My hubby is constantly telling me that it's not my fault and that I didn't ASK to be ill.

I am very good at "putting a brave face on it" but have lately realised that I'm sometimes too good at doing it (for my own good that is) and now I do sometimes say to people "not great today but I'm sure tomorrow will be better" rather than blithely saying I'm fine as I hobble past them :lol:

I too have been finding driving increasingly different. If it is a long trip my legs go to sleep from neuropathy and my hip is excruciatingly painful through not being able to move. I also have Achilles tendon problems that aren't helping. I now find that I don't really have the strength to hold the clutch pedal down so any slow traffic is slightly panicky. I think the next car will have to be automatic

I hope you enjoy being here and that your current problems pass quickly, bye for now,

Katharine

 

[donna kosk]

hi lesley


i know what you are saying about people think not ill again i have it every day with family they look at me has if im tellin lies i think that hurts more then the physical pain but never mind your husband seems to supportive and your son and really thats all that matters keep your chin up


donna

 

[KarolH]

Hi Lesley,

Welcome to the forum.

Hope you come to like it here as much as I do.