Hi,
I rang uni today and they asked what I had for a disability and did I need support. Made my day that they are there for you. on a positive note my next assessment is sounding great and I feel okay after going back to work. I am getting to know my limitations. Thanks for all your helps guys. Shantalle
I'm such a dork...I read your post about the light...through a window! I never thought about that...I assumed it had to be direct sunlight......aarrggghh. My desktop is on the east side of the house and in the morning is when I can sit up....but I'm sitting in the sunlight...... ;(
Thank you for your information!
Hi, yes tiredness is a big part of having Lupus. It is something you learn to live with. If you are tired you need to relax, if that’s not possible at the time and you are working, when you get home you need to learn to delegate to others. I understand that it is getting you down, but positive thoughts will help. Keep your chin up and try to keep smiling.
Stay in focus with every little thing !!! It helps -anything !!!!!!!!!!!!!!!!!!>>>>>>>>> Beverly L.
Yes , ALWAYS FIND THE TIME FOR RESTTTTTTTTTTTTTTT!!!!!!!! Make it become your number one thing , well second ( or better yet - do like i do - just take a moment called a POWER nap ) , it only last for 30mins. !!! Hay !! it helps to get back the swing of doing one more round for the day, b4 you call it a nite !!! ... Beverly L.
Aussie Karen said:
Hi, yes tiredness is a big part of having Lupus. It is something you learn to live with. If you are tired you need to relax, if that's not possible at the time and you are working, when you get home you need to learn to delegate to others. I understand that it is getting you down, but positive thoughts will help. Keep your chin up and try to keep smiling.
Hi there Shamwow, How are you feeling now? I know we have been all been chatting to you about having power naps etc? I was just wondering how you were getting on now. I have been extremely shattered and exhausted myself. I am right in the middle of a flare. As soon as i got home from shopping yesterday i had to lay down and have a short sleep, so i do understand how you are feeling. If ever you would like to talk feel free to message me any time. Take care, keep strong, bye for now, look after yourself, love and hugs Astrid40xoxo
Hey,
I was going well after the 4 day long weekend but I had to work 10hr 4 days straight and Thursday was a hell of a day at work. I am trying to get everything ready for work and uni before I leave for my holiday. So since Thursday I've been shattered. I used all my spoon yesterday. Had a 5 min nap today until a friend knocked on my door. Nearly had a power nap. I was early to an appt today so it foeced me to go to a cafe and rest for 2 secs. Astrid take care and rest since you have a flare at the moment. I know how you feel. Thanks for all your support and everyone else on this forum. Shamwow
Hi Shamwow,
Fatigue is a definite symptom, before being diagnosed with Lupus, I would get frustrated, agitated and very tired after being in the sun for longer than 1 hour. I could not understand it nor control it, only until I laid down or went into the shade my agitation would decrease. Only when I went to a bed and closed the blinds would I become my normal happy self again. In 2010, my daughter and I went to Disney world in August!!! The heat index reached 95 by 10 in the morning, we were in the hot Florida sun all day, walking around "the happiest place on earth" and I was so miserable. Then my skin started to get these spider web rashes on them and my cheeks felt hard and scaly. When we returned to the hotel room, I showered immediately and just jumped into the bed. The next day, I found activities to do after 4:00pm. It's amazing how the body can tell us what to do for relief when modern medicine does not help us. Upon returning to my home, I experienced a flare for 2 days and just rested closed all the blinds and was better.
The most horrific part of this Lupus for me is the constant fatigue, once I get home from work, I go right into the bed and I can feel my body recovering, it feels like the blood in my body is draining out and my knees begin to ache. Then after 2 hours I am better. My newest annoying symptom is insomnia, for the past two days I have awoken at 4:00 am and not returned to sleep. I guess its a flare or it can be stress. I am not sure.
Please continue to share your stories and heartache believe me I have many to share as I do. :) Be blessed and stay well.
Hi Shamwow, thankyou so much for your lovely message, i am so sorry you are having it so tough at the moment. Thats a long old weekend you have been working there, and four days straight thats a killer isnt it? It reminds me of when i used to work nights as a nurse continually, and we used to do one after another, and couldnt get to sleep in the mornings afterwards as we had gone past the tired time. So we would carry on when we got home and not get alot of sleep, then be back out to work again. What a shame you only got 5 minutes nap. When i was studying i used to put a note on my door saying please do not disturb resting thankyou. and i used to put a time say half an hour on it so people knew how long for. OKay some people were abit annoyed but its tough. Those who really care about you will understand. I explained to the people who i thought might knock why i was putting the note on the door in the future and it helped me to get my rest thankfully. Its just an idea, you could get yourself like a dial timer or just write on it back in half an hour or something writing the time on there, then they dont even have to know you are in even. You have to do what you have to do for self preservation. I am sure if you explain to your close friends that they will understand hopefully. Would they understand? Or am i wrong? I know that people arent very understanding sometimes. I wish you luck with that. You really do need your power naps. I am just trying to help you by remembering what i used to do when i was studying. Its just an idea, people do get the message eventually, you cant run on fresh air. Anyway you take care, look after yourself, i am thinking of you, keep recharging those batteries, keep strong, love and huge hugs Astrid40xoxox
Shamwow said:
Hey,
I was going well after the 4 day long weekend but I had to work 10hr 4 days straight and Thursday was a hell of a day at work. I am trying to get everything ready for work and uni before I leave for my holiday. So since Thursday I've been shattered. I used all my spoon yesterday. Had a 5 min nap today until a friend knocked on my door. Nearly had a power nap. I was early to an appt today so it foeced me to go to a cafe and rest for 2 secs. Astrid take care and rest since you have a flare at the moment. I know how you feel. Thanks for all your support and everyone else on this forum. Shamwow
Hi Shamwow,
I have anemia like yourself and it does make you really exhausted to the extent where trying the slightest thing wares you out, it took them 6mths to find i had anemia that low at 8.0 because the Lupus was fluctuating my bloods and now i take folic acid daily and also receive a b12 jab every 3mths but i'm pleased to hear you've been given supplements to help raise it....because if you are lupus related and not found out yet, lupus takes the b12 from your stoamche area where it's mainly stored to help you.
This which you have pointed out (I am so glad others had a feeling of fatigue and I didn't relise that we could be photosensative as well. I've been reading that we can get brain fog and I am feeling like that at the moment.) Lupus suffers get badly but i do advise that it's always best to be well protected where the sun is concerned also.
Hello Shamwow, fatigue has been one of the worst symtoms I have experienced. I have Lupus and fibro and the fatigue has gotten worst. I like to take walks and get the exercise they say it will help. So far it is not working for me. The more I try the worst I feel, but I am still moving when I can. Hang in there and when those good days come cherish them. This is a good place to talk with those who understand what you are going through, and no your not crazy try to find enjoyable things that don't require a lot of energy. I have been catching up on my reading and I play games to distract the feeling and comedy always work for me. Take care !
Hello Purplefav,
Your correct in your advice in (try to find enjoyable things that don't require a lot of energy)...i've had to pace my life very slowly but i've come to enjoy finding the site which is great besides being with a staffysite for my staff but i mostly enjoy is reading at night, i find it relaxing.
I've found if you find a few interests it can ease the mind sometimes. x
Hi there Tez_20, I am the same too, i used to do alot of dancing and triathlons when i didnt have the Lupus. I used to teach Ballet, Ballroom/Latin American, Modern dancing, and do Triathlons which meant running so many miles, swimming so many miles, and cycling so many miles. I couldnt imagine doing even any of those now. So now i get what i can from reading in bed. And cuddling my Yorkshire Terrier dog. I used to foster dogs for Dogs In Need, but i had to give it up in the end. The last dog i fostered from Dogs In Need i kept which was a Golden Retriever which was twelve years old, no-one wanted to take him one being the age he was, so they asked would i keep him on, so i did which i was really pleased i had, he lived until he was seventeen. But i knew after he had passed on, that i wouldnt be able to have a big dog again, as my legs were alot worse and i was walking with a frame on a good day and using a wheelchair on a bad day. On a really good day i get outside and do some photography which is another hobby i have had for years. I think it is hard finding other hobbies if we have been really active before, but not impossible, and i have adapted to them, and do enjoy what i do instead now, I really enjoy a good book in the evening, I am always recommending a book written by Carla Ulbrich called How Can You Not Laugh At A Time Like This. Carla Ulbrich is a Comedienne, Actress, now Authoress who has written this book and another one, because she has been diagnosed with a few auto-immune diseases one of them being Lupus, Its a good book, and i would recommend it, if you fancy reading someone elses story and a little bit of a laugh too. You will find yourself saying i know what she means by that. Anyway bye for now, take care, look after yourself, love and hugs Astrid40xoxo
Hi astrid40,
I bet the Ballroom/Latin American dancing was nice and kept you fit, now that's one thing i do like watching. Well go back 2yrs concerning me and my staff i could walk him over the canal several times but with everything going on, it's took me down bad in the last 2yrs, according to how the day comes it's either a walking stick/crutches/ rollator which is great/wheelchair and if i need to walk out now it's an electric scooter and it bad when you come to think at 44 this year, my sister also as it in her blood but won't seek the help like me refuses to.
Your Golden Retriever lived to a good age, my hubby as said to me if anything happens to bruno would you have another and i told yes a jack russell.lol they're litter, as Bruno is only 4st lighter than me.
astrid i'm into novels from the 1800s-1960s by josephine cox etc because when your reading them it's like your living in that time and the things said to make me laugh, i think that's the only time it mainly happens.
My hubby is with a Rove forum as we have 2 motor's and the member's meet up and straight away they get the marque out and i'm there all day with bruno but chatting with the men, it gives me a break from in doors.
I hope you feel better soon (Hugs Terri) xxx
Hi Tez_20, Thankyou for your lovely message. Yes i used to love the Latin American/Ballroom. At first i couldnt watch it on the television as i used to get abit emotional knowing i couldnt do it anymore, i know abit silly i should of just accepted it, but i supposed i was grieving. But now i love to watch it. We have a lovely canal near where we live, its only about ten minutes walk away, again its whether i am up to it, abit like yourself really. Staffies do like a good run dont they? The good thing though about Staff's though is that you can stand there or sit there and throw a ball for them and they will be happy as larry for ages, they love to just run and run after a ball for ages dont they? I have friends who have them. Jack Russells are usually the same. Now Harald, well show him a ball, he expects me to chase him with it, daft dog, he wont retrieve it no matter how many times i have tried to teach him, and i have got experience as you know after all that fostering, hehe. It is a shock for us having to use aids to walk after being so fit isnt it. What a shame that your sister wont get help, of course she will have to in the end, because one day she might end up having one huge flare, or something that causes her to land up in hospital, as Lupus is so unpredictable sadly, I hope this never happens for her sake. My mum was like this, when they said they were doing blood tests to check to see whether Lupus could be hereditory, she said no i dont want to know, and wouldnt even have the test, even if they didnt tell her the results, some people are like that, its like ignorance is bliss to them, silly really.
I have read a few Josephine Cox books, and another lady who i think you might like called Marie Joseph a similar era where its all coal mines up north and all sort of bleak times with romance etc. A good funny book though you might like is "Blake, Diary of A Bad Dog" by Martin Howard. Obviously its what it says it is, but its written in story form, it has you laughing though right from the first page, honestly if you ever see this in a charity shop or anywhere pick it up and have a look you really will laugh, its about this mongrel dog and his male owner, and this dog who is obviously not very well behaved and everytime he does something wrong, his owner threatens to take him to training classes. There is a lot more to it, i like something that makes me laugh occasionally, we need that dont we. I started looking at a new one online only this morning that could be funny, i think its a re-issue of a book, if i do read it and its good i will let you know. I think its good to have a sense of humour, well essential really, hehe.
I used to go to car rallys, i used to go to the Brighton Car Rally in November, i used to love going to that, so i am not a stranger to cars, so i dont blame you, good for you girl. I was abit of a tom boy when i was a kid. I had the usual girls toys but i had one of these car tracks that you fixed onto the window sill, and loads of these match box cars that you could run down it, and a train set too, thats my guilty secret, hehe. I am 44 now myself, We have alot in common. Like you say it does you good to get some fresh air. Anyway take care, bye for now, love and hugs Astrid40xoxo
The latin and american dancing looks so quick i bet it did keep you fit with everything else you did but the women always look so lovely, well it would upset you knowing that's what as just stopped through the lupus but i bet you find it such a lovely pleasure now and you can chat with other's about it like a judge knowing you've already done it.Well our canal is only over the road from us through an alley and your on it.lol refering running staffs it's an hour twice a day wich i used to do but no my hubby take him and does 2hrs every dinner time and he's happy with it. Bruno loves his ball but a pulled his shoulder 3 times pouncing into the ground so it's ever other day and he's on a diet he was 25.9kg and is now 24.75 and the vets want him at 24 he's just had his parvo booster and been covered for kennel cough and the after affects are like the flu jab, sneezing on and off i'll be glad when it's gone. astrid jack russells are half staff and a terrier to make a rabbiting dog and they carry the temprement of a staff but abit nastier. Harold's trying to keep you going bless him.lol they are cute.
I think my sister does'nt want to know seeing me go through years with one thing after another she's seen a dermo for her skin and uses a steriod but otherwise she's told me no and she's got Arthritis and a gap in her back with it and her back locks and all her toes broke naturally and never knew till the pain got to much but like you say there'll come a time when she's got no choice and how your mom refused,my parents are dead but i know they would have been tested. On my dads side it's cancer/strokes/asthma/skin trouble/arthristis and my moms side diabetes/lung disease/heart attacks and also arthritis, so my doc keep regular blood checks on me.
What you stated below is what i read and it always as to have romance in it.lol but i do love reading about the canal women and gypsy women back in those times also, they're lovely novels to read.
(I have read a few Josephine Cox books, and another lady who i think you might like called Marie Joseph a similar era where its all coal mines up north and all sort of bleak times with romance etc.)
I've just written down the "Diary of a bad dog" and right across from we, we have shops/doctor's/church and library so they'll get it for me hiopefully.
Your making me laugh here because we do have such alot in common i was like a chap when i was younger, prefered a bike than toys.lol and over the weekend at bromsgrove their was a massive car show for all the old motors and yesterday 118 different rover's, my hubby as a rover connisseur estate for bruno and a MG ZT 190 forif we're on our own for quickness but i have to be under something with my skin because the bad wind make the sun burn my skin bad and then i get the chills later off the raynauds...i'm typing to yourself wearing gloves what a life.
I'm 44 in august and we both live outside wolverhampton but i was'nt born there, i actually come from willenhall the black country, if you spoke with me my accent is so broad.lol
Takecare Tez xxxx
Tez_20
..my parents are dead but i know they would have been tested. On my dads side it's cancer/strokes/asthma/skin trouble/arthristis and my moms side diabetes/lung disease/heart attacks and also arthritis, so my doc keep regular blood checks on me.
I was just thinking about this very topic today. Heredity. My family has the same line of diseases you mentioned. Oddly, my grandmother has 2 sisters and both my grandmother and great aunt (her sister) died between 61-65 the same way in their sleep from heart problems. The last surviving sister is healthy at 77 years old. I wonder if there is a correlation between the prior listed disorders and autoimmune heredity.
I know this is not the crux of your response, but I thought it was interesting that we both thought of the same thing.
Lupus as a larger percentage carried with it concerning it being heredity...it seems like your family line have had the same as my moms side, my moms mom died from an huge heart attack, then my mom and her sister's all 3 of them full diabetes with lung trouble and finally heart attacks.
Seeing my past i've had strokes and my dad and some of his brothers and sister's died with that and cancer...i've missed cancer so far concerning myself but i have low sugar instead of high which my mom had.
Well i'd say there's a large possibility of autoimmune heredity, especially me havining inherited it, then my youngest sister as lupus in her blood and my eldest sister is in spain so i don't know about her.
Hi there Tez_20, Goodness with all those different health issues on both sides of your parents, its a good job that your doctor is keeping an eye on you. My Grandmother was a child of ten brothers and sisters. Alot of her brothers and sisters have sadly passed away now. I think there are only two that are still alive, one sister and one brother. It does make me think though with the brothers and sisters of my nans which are ten in total, they all had children. Do they have auto-immune diseases. I know there are still some forms of auto-immune diseases happening in the family blood line, as one of the cousins has Rheumatoid Arthritis, and another has Ulcerative Colitis. It would be really interesting in a way, if they were all to be tested. It wouldnt be very nice for anyone, but would be very interesting, and good for records and research too. As they do use that sort of information especially in large families. My grandmothers children, she only had five children. A son, two daughters and twins that died. My nans son died of cancer at about 40odd. That was my mothers mum. On my dads side, my Nan had an auto-immune disease which use to affect her kidneys, i cant remember the name of it now. Both her sons died of cancer, my dad and his brother before my grandmother and grandfather died, strange isnt it? As in life we dont expect the parents to outlive the children. Anyway bye for now, take care, look after yourself, speak soon, love and hugs Astrid40xoxo
Unshoreandscared said:
Tez_20
..my parents are dead but i know they would have been tested. On my dads side it's cancer/strokes/asthma/skin trouble/arthristis and my moms side diabetes/lung disease/heart attacks and also arthritis, so my doc keep regular blood checks on me.
I was just thinking about this very topic today. Heredity. My family has the same line of diseases you mentioned. Oddly, my grandmother has 2 sisters and both my grandmother and great aunt (her sister) died between 61-65 the same way in their sleep from heart problems. The last surviving sister is healthy at 77 years old. I wonder if there is a correlation between the prior listed disorders and autoimmune heredity.
I know this is not the crux of your response, but I thought it was interesting that we both thought of the same thing.
Hello Astrid,
With how you've explained your family history, it's like health issues have followed the same as mine...now on my dads side going back to my 10th g/grandfahter as i worked on the family tree all brother and sister in each line went as fare as having upto 15 children...mind you that's alot for a woman and with my dad and siblings there was 13 but on my moms side 3-4 children the most but furthur back in generation it reaches 8-10 children but like you say what if cousins was to be tested they'd have to be carrying some autoimmune disease like you say or even lupus itself but i do what the tele and science itself loves these kind of issues.
I watched a programme ages ago about arthritis carrying in family's and twins apparentley are the most at risk to carry arthritis if twins are in the family and there was quite a few twins on my dads side going back in generation.
I know i should'nt say this but with both family's and what i've come to having besides other issues...sometimes when i'm really stressed and down and end up crying, i often say to ste i'm only missing either cancer or an heart attack.
You takecare also dear friend and all my love to you. xxx
astrid40 said:
Hi there Tez_20, Goodness with all those different health issues on both sides of your parents, its a good job that your doctor is keeping an eye on you. My Grandmother was a child of ten brothers and sisters. Alot of her brothers and sisters have sadly passed away now. I think there are only two that are still alive, one sister and one brother. It does make me think though with the brothers and sisters of my nans which are ten in total, they all had children. Do they have auto-immune diseases. I know there are still some forms of auto-immune diseases happening in the family blood line, as one of the cousins has Rheumatoid Arthritis, and another has Ulcerative Colitis. It would be really interesting in a way, if they were all to be tested. It wouldnt be very nice for anyone, but would be very interesting, and good for records and research too. As they do use that sort of information especially in large families. My grandmothers children, she only had five children. A son, two daughters and twins that died. My nans son died of cancer at about 40odd. That was my mothers mum. On my dads side, my Nan had an auto-immune disease which use to affect her kidneys, i cant remember the name of it now. Both her sons died of cancer, my dad and his brother before my grandmother and grandfather died, strange isnt it? As in life we dont expect the parents to outlive the children. Anyway bye for now, take care, look after yourself, speak soon, love and hugs Astrid40xoxo
Unshoreandscared said:Tez_20
..my parents are dead but i know they would have been tested. On my dads side it's cancer/strokes/asthma/skin trouble/arthristis and my moms side diabetes/lung disease/heart attacks and also arthritis, so my doc keep regular blood checks on me.
I was just thinking about this very topic today. Heredity. My family has the same line of diseases you mentioned. Oddly, my grandmother has 2 sisters and both my grandmother and great aunt (her sister) died between 61-65 the same way in their sleep from heart problems. The last surviving sister is healthy at 77 years old. I wonder if there is a correlation between the prior listed disorders and autoimmune heredity.
I know this is not the crux of your response, but I thought it was interesting that we both thought of the same thing.