Joined
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339 Posts
Hi friends and fellow lupus suffers,
Not posted here for a long time. Im just getting on living with Lupus as you do when you are well enough compared to where you have been in the past.
Thought maybe time I signed in and said Hi. Ive had lots of help from here in the past.
Felt I was getting a bit of a pain whinging on. Eventually I got myself on Plaquinnel.. no thanks to my Rheumy. I think Im doing good compared to how I was. Not that he would really know as Ive not seen him for months and months. My GP is very supportive but Ive not bothered her much lately either.
The terrible fatigue has lifted a lot.. the joint pains are lessened compared to what they were but things still come and go intermitently.
Is that how it is?
Im finding im increasingly disabled really. I just cant walk far.. I cant do steps I cant do standing I cant sit for long periods either. I sort of look ok. I have to explain my lack of stamina but its difficult because nobody really knows what Lupus is so I just have to say.. oh I have a bit of arthritis .. its easier because people seem to know what that is.
I still find it difficult going to large supermarkets. Took my grandaughter to buy a party dress today and cant even manage a small retail park. I do really struggle with walking.
Is that normal?
I still have real difficulty getting out of the car. Steps are a real nightmare. I cant get up from low seats and havnt been able to have a bath for about 10 years. (Have had a shower.. or two ... if you were wondering there lol) I cant sit on the floor or beach because i cant get up.
On the whole ... Im doing better than before the Plaquinnel.
Oh dear... why am I here.? There are lots of people much worse than me.
Suppose Im feeling frustrated. I want to be normal. I look normalish. Why cant I do things like most people?
I want to strut round town in high heels and not look back. I struggle in flat boots or flip flops in the summer. Still cant walk properly.
Lol... laughing at myself here.. Ive never been able to walk in high heels and being 5ft 10 I suppose Ive not really needed to.
I have been properly diagnosed as having Lupus but sometimes I think.. well what is Lupus? Nobody knows what it is. Even my Rheumy says.. get more exercise.. and you will be fine. I dont really feel that fine. Everything is quite a struggle.
Other than the above whinging Im quite happy really. lol.
Im sure I have nothing really to moan about ..least I can walk a bit and I know some of you have much worse problems.
Anyway I know this is a place I can come for a whinge. When I read your stories on the posts I feel lucky I am as good as I am. Thats bad I suppose to read other peoples misfortunes and feel lucky.. but I do. I suppose at low moments even small problems seem insurmountable dont they.
Anyway.. thanks for letting me be self indulgent. Hope you are all as good as you can be.
Luv ya Lots
Sal xx
Not posted here for a long time. Im just getting on living with Lupus as you do when you are well enough compared to where you have been in the past.
Thought maybe time I signed in and said Hi. Ive had lots of help from here in the past.
Felt I was getting a bit of a pain whinging on. Eventually I got myself on Plaquinnel.. no thanks to my Rheumy. I think Im doing good compared to how I was. Not that he would really know as Ive not seen him for months and months. My GP is very supportive but Ive not bothered her much lately either.
The terrible fatigue has lifted a lot.. the joint pains are lessened compared to what they were but things still come and go intermitently.
Is that how it is?
Im finding im increasingly disabled really. I just cant walk far.. I cant do steps I cant do standing I cant sit for long periods either. I sort of look ok. I have to explain my lack of stamina but its difficult because nobody really knows what Lupus is so I just have to say.. oh I have a bit of arthritis .. its easier because people seem to know what that is.
I still find it difficult going to large supermarkets. Took my grandaughter to buy a party dress today and cant even manage a small retail park. I do really struggle with walking.
Is that normal?
I still have real difficulty getting out of the car. Steps are a real nightmare. I cant get up from low seats and havnt been able to have a bath for about 10 years. (Have had a shower.. or two ... if you were wondering there lol) I cant sit on the floor or beach because i cant get up.
On the whole ... Im doing better than before the Plaquinnel.
Oh dear... why am I here.? There are lots of people much worse than me.
Suppose Im feeling frustrated. I want to be normal. I look normalish. Why cant I do things like most people?
I want to strut round town in high heels and not look back. I struggle in flat boots or flip flops in the summer. Still cant walk properly.
Lol... laughing at myself here.. Ive never been able to walk in high heels and being 5ft 10 I suppose Ive not really needed to.
I have been properly diagnosed as having Lupus but sometimes I think.. well what is Lupus? Nobody knows what it is. Even my Rheumy says.. get more exercise.. and you will be fine. I dont really feel that fine. Everything is quite a struggle.
Other than the above whinging Im quite happy really. lol.
Im sure I have nothing really to moan about ..least I can walk a bit and I know some of you have much worse problems.
Anyway I know this is a place I can come for a whinge. When I read your stories on the posts I feel lucky I am as good as I am. Thats bad I suppose to read other peoples misfortunes and feel lucky.. but I do. I suppose at low moments even small problems seem insurmountable dont they.
Anyway.. thanks for letting me be self indulgent. Hope you are all as good as you can be.
Luv ya Lots
Sal xx