[sjink]

Hi was using the board without introducing myself, sorry

I am 53, dx with SLE since 2000 and Sjogrens since 2004. Mostly fatigue and joint pain, plus a tendency to get any infection going - tooth, flu, gut you name it I pick it up. I have had CNS involvement but is quiet now except for cognitive dysfunction and the occasional mood dip. Meds inclue mepacrine and NSAIds plus pain meds, omeprazole, fish oil, glucosamine, aspirin, eye drops, mouth gel and lots of other peripheral bits and pieces depending on which bit isn't working.

I mostly cope OK, but had a bit of a slump this year, very tired, very achey and not able to do much. I have a very supportive partner. I work occasionally from home but lately I have mostly been lying around reading and wanting more chocolate than my partner will go and get for me! I have mobility problems, find it hard to stand for any time really and can only walk short distances, and some days no distance at all. I love reading and sewing and knitting so I don't get bored but just now am really missing what little energy I had 7 months ago, it went when I got a cold and has never come back. Still, trying a new NSAID might help. If not I will go back on steroids form whch I have had a year off.

Thats it. Thanks for all the support so far.
Sara

 

[LBH]

Hi Sara!

Hi Sara! My name is Lynn and it's a pleasure meeting you. I am a newbie in here also and maybe I should also introduce myself also! I am 48 and married. I have 3 children all of which are grown and two are married. I enjoy reading, gardening but garden when the sun is down. Like to swim and crochet. Enjoy cooking and will share many recipes soon.
Just recently had surgery which slammered me into a flare also. That stinks! :blush: I have the balance problems too and mobility problems and wear out rather easily also.
Don't you just wish that we could both have two weeks of no lupus in our lives. That would be so nice and relaxing for a change. Not fun being in pain or suffering from this disease constantly. It can be very nerve racking. I am glad to be meeting you and hope one day when I have the time I see you in chat. Not quite ready for the chat just yet. But maybe someday.

 

[sjink]

Hi Lyn, nice to say hello.
Only today I was thinking about a couple of lupus free weeks or even a couple of days. I am pretty used to it most of the time but it would be nice to be well, to walk fast, stay up late blah blah just for a bit. And not to be constantly going back to bed for a rest. Oh well. I loved to garden but we gave up our house with garden last year, too much as my partner had to do a lot of it as my health is up and down. I would plant loads of seeds and then not be able to cope with the seedlings. And no strength for watering. We have herbs and flowers on a balcony and go out to gardens instead. We have some lovely gardens in historical houses near us. We have two grown children, and two almost grown grandchildren, which I can't quite believe still. I love cooking and am always learning new reciples, into japanese and thai at the moment and using lots of soya products to keep my cholesterol and weight under control a bit. Mustn't talk food too much ha ha... I am just so hungry now when the fatigue is bad.
Yes maybe chat one day... not for a while though wait until i have more energy.
Sara
x

 

[LBH]

Hi Sara!

Hi Sara! I think we are both in the same boat right now. Since my surgery I have home bound for several weeks not getting out except for doctors appts. And have not really wanted to do that much either. Ohh my joints are hurting today.This morning I woke up at 2:30 and have not been to bed yet. Lupus was acting up last night. I took my bath and placed a clean night gown on and have been laying around all day. Yep! No energy today. Maybe tomorrow I hope!:sad:
The gardening this year became different than my other gardens as before. It's a vegetable garden but my husband took my idea and laid tarp down and we bought some nursery containers. Those large tree kind. Ordered the top soil and planted our seed for fresh vegetables. Less work and can be used year round with little or no maintenance. So far I have froze 10 pack of fresh broccoli, had two meals of fresh cabbage. Ate my first 2 tomatoes and picked a few Bell Peppers and this weekend I think I might have my first Zuchini! We only planted enough for me and my husband. Not a huge garden this year but large enough to enjoy eating for the summer and freezing a few things. Hope you feel better soon and wish you well. :lol::hehe:

 

[LolaLola]

Hello to you both. Welcome here. I like gardening too but don't bend down very well. I get a bit breathless and am inclined to fall on my nose!
x Lola

 

[pennylp]

Hello Sara,

A big welcome to you... I glad you found this site... I am sure you will enjoy coming here as much as I do... The people here are friendly and kind and very supportive... You will also find all kinds of in formation...
It is great to come to a place where everyone understands when you tell them you are extremely tired.... they know the kind of tired we are talking about... Hope to chat with you soon... Again welcome again..

Love Penny

 

[lazylegs]

Hi Sara,

Sorry to hear things aren't going so well right now for you. Functioning with extreme fatigue can be so hard.

I too have mobility problems. My saving grace is a rolling walker with a seat. It is amazing how much faster I can move with that stability. It is energy saving also. I am not fighting my body for balance. Plus there is the seat to rest on. The basket and propping things on it save my arms from carrying things all over the house. I am able to accomplish more with it than without.

My dear husband set up a watering system for me so I can still have my flowers. Planting is still an issue, I just do a little whenever I can. One thing I found helpful was a kneeler with sides to help me get up and down. Flipped upside down it acts as a seat to rest on.

My motto is to use things that make your life easier. Why struggle and use up what little energy you do have. Also when your body says quit, listen to it.

Take care,
Lazylegs

 

[sjink]

Hi all, thanks for saying HI. I;ve not been very well this weekend but will post again soon and reply to you. Sara xx

 

[caper]

I seem to have similar meds to you

Hi was using the board without introducing myself, sorry

I am 53, dx with SLE since 2000 and Sjogrens since 2004. Mostly fatigue and joint pain, plus a tendency to get any infection going - tooth, flu, gut you name it I pick it up. I have had CNS involvement but is quiet now except for cognitive dysfunction and the occasional mood dip. Meds inclue mepacrine and NSAIds plus pain meds, omeprazole, fish oil, glucosamine, aspirin, eye drops, mouth gel and lots of other peripheral bits and pieces depending on which bit isn't working.

Hello Sara
I believe that I go to the same clinic as you, Dr. Bruce at MRI, so I suppose that ists not suprising that I have similar meds to yours. How are you getting on with the Mepacrine? I am having a rest from it at present, but not sure if I was better with it or not. The fish oil (Maxepa) that I have just started taking is causing me terrible indigestion, did you have any problems of that kind, and did you find it got better once you were used to it? Many questions, I hope you dont mind. I also hope you are feeling goodish at present.
all the best
Caper

 

[sjink]

Hi Caper...

yes it is the wonderful Dr Bruce. He's great. I know Dr B. tries to give us as little medication as we can get by with. I could not take Plaquenil so we tried mepacrine. It helps with the fatigue a bit but not the joint and connective tissue pain. I can only take three mepacrine a week as 4 made me start to go yellow. As it is I am a bit yellowey - especially under my armpits - hmmm not very attractive. Fish oil is OK with me and it has helped keep my tryglicerides down, I get high cholesterol probs (runs in family). I am not sure it makes me any better physically though. Make sure you eat the fish oil with food, swallow it in between mouthfuls is best, your tummy will be better then. Mind you I take losec which helps stop acid reflux.

Glucosamine helps joints a bit - do you get joint pain?

I am feeling pretty crap to be honest. I know it is only "mild' Lupus but it has knocked me around this past six months and I get very tired, irritable, anxious, woolly brained etc. etc. I am trying arcoxia as a NSAID which has def. helped a bit. I have had another cold this week, I keep getting infections. Sorry, going on a pit party then... I hate to moan though as some people are much much more ill than I am, and mostly i stay upbeat.

i have not tried coming off mepacrine, but I did go on holiday without it for a week and my partner noticed i had less energy the week after I got back. I always have energy on holidays for the first three days then sleep the rest of the time away ha ha.

I definitely got more done with my life when I was on steroids but I am someone who has put on weight since getting lupus DX, I think because I don't burn off calories much I used to be very very active. Steroids would put on even more as they did last time.

Gone on a bit, sorry about that. Love to hear back from you.
Sara

 

[cinderashes]

Hi Sara, i just wanted to say hi, I'm Ash age 31 and I'm in NW England as well (Blackburn), sorry you've not been feeling too good lately I hope things improve for you. I'm doing much better than I expected I would 4 months after the birth of my baby but it can be hard work! Espeically with joint pain and achiness... Luckily baby is very good and my husband is really supportive, I'm glad you have someone to help you out too it makes it much easier doesnt it? (especially when chocolate is concerned!)

Anyway thats all, just wanted to say hello to a fellow north westerner!
take care
Ash x

 

[sjink]

Hi Ash
Nice to meet you and congratulations on that baby. So pleased for you.
Supportive partners are wonderful, I think mine worries about me eating chocolate but see s the benefit. He always buys the very dark low fat type, but its still yummy.
Hope you continue to feel good and enjoy motherhood.
Love
Sara