illness

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hi everyone, well i guess i should start with telling you what i suffer with, Ready.

Lupus, fibermeralgia, Me,sjogrens syndrome,dry eyes and mouth,connective tissue disorder,brittle bones,inflamed voice box , arthritis,my eye site is deteriorating .i get a strong pain on my left side almost where your apendix would be,but the other side and am now suffering with 5 kidney stones on one side and 6 on the other got a pars defect in my spine, and am at the moment suffering with not being able to walk. but i still smile.i guess most of my ailments are caused through the lupus, but not to sure i just take it as it comes. i am on ora morph, fentanine patches and a lot of tablets via mouth . i know thinhgs are hard and some times get me down but i really try not to let it beat me.is there any one else out there who suffers as i do and perhaps if so we could talk and pick each other up and try to understand when it is bad compaired to other times when only a few of the elments get us instead of all of them. my saying in life is smile it confusses the buggers, and i do and it does. but some time ifine it hard when people look at me and say you look so well and really you just dont know where to put your self or how to deal with that days pains. but i refuse to make it some one else's problem.

people who know me know when they look at me that i am bad.my really good friend says come and see me and she wraps me up in her duvet on her sofa we talk and i start slering and making no sense so she knows i am going down hill, that is the worst thing talking and know one understands you, not due to meds , dont know why that happens. once was talking to my husband and i feel aslaap talking to him when i woke up i carried on talking but he was not there, i phoned him and he said that that was 3 hours ago, so yes very mind boggaling some times.

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  • Posted

    Hi Deena,

    Firstly, I want to say, I LOVE your spirit and attitude in the way you're handling your illnesses! Your friend sounds amazing and so nice you have someone like her that can comfort you when you're having a bad day. I understand your frustration in trying to explain to people what's going on with your health. Externally you look like a million dollars, internally you look and feel like crap. In my case, I stopped trying as I don't have the energy to explain it to them. I just tell them to google it! I have had fibro for 26 years and was only diagnosed with discoid lupus 2 years ago. I have similar issues as you in dealing with both of these conditions. The dry eyes and mouth are from medications and/or ageing. I just use eye drops and chew a lot of gum which helps with salivia issues.  I am on plaquenil for the lupus and have to have regular eye exams. If your eye sight is deteriorating due the medication, you should go off it and try something else or even lessen the dosage. How long have you had your lupus and fibro??The fatigue is what gets me down the most and probably makes me the most depressed at times. Trying to explain this to people is futile. Unfortunately it is something we all have to come to terms with and try to deal with it the best way we can. I no longer have to have the perfect house, I clean one room at a time and then rest. If I don't get the rest done, well there's always another day. I am lucky in one way, I am single so I don't have to cater to anyone but myself, but if you have a companion who supports you, then you are the lucky one. My concern is your kidney stones, the pain on your side, brittle bones, spine and eye sight problems. Hopefully your doctor is looking into and addressing these problems. I think if you were able to get one of those above sorted, it would give you a sense of victory and we all know, a small victory is huge for us. Remember, you are not alone in this and sometimes you just need to vent to get rid of those pent-up emotions. I would like to go into a soundproof room and just scream sometimes.  Let us know how you're doing.  Take care!

    Cheryl

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    • Posted

      Hi Cheryl i was so shocked you replied to my message, and thank you for taking the time to read it and answer.i have got swollen legs and feet at the moment, the pain is in my back so i dont know if it is my back complaint. but i saw my doctor who said just REST that is all i ever get told by them they just dont have a clue. he said my perscription would be filled on thursday come thursday nothing then my husband went down to the chemist on friday to complain as i am in so much pain, old to be given a bottle filled with 6 measures and told that should last me until monday.

      i saw my husband off to work at 5.30am made his flask and went back to ned i woke up about an hour ago and was so confussed i didnt know what time it was weather my husband had gone to work if my son was still in bed or gone to work, it is horrible i looked at my watch ,and tried to piece it all together my husband had gone i searched my brain and remember having my breakfast but i really do not remember my son going.it is mad, (or i am) lolhow are you today are yo in remisstion or are things still active for you? i got told to think of your self as having a full spoon of suger at the start of the day, showering drying your hair and getting dressed is half the spoon gone then you must make the other half last the day,when the energy dropps you are feeling tired and worn out i tend to last 2 hours and sleep for 4 and that is my days normally . but with my not being able to walk i am just stuck in bed.

      i am a great film lover but i keep falling asleep through them , we went to see 2 fast and 2 furious my husband said he enjoyed it but it was extra loud and he also had the hump with me as i fell a sleep and snored my head off 3 times, obviousley not to loud for me.;-)ill let you go and hope you have a good weekend. Dee

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  • Posted

    Hi Deena, what an inspiration to us all, I also have lupus and fibro with a few other ailments,

    I love your attitude, I also keep as positive as possible, it makes me laugh to myself when I hear people in work complain about a headach or a blister on there foot where there shoe has rubbed, or when they complain about a bad hair day when they have thick gorgeous hair down there back, when I'm sat next to them with mine falling out or thining depending on how my flare is going,

    My very good friends know me well and know when I'm not well it hour saying anything to that's true friendship,

    You just reminded me years ago I used to be talking or doing something and I would fall asleep and wake up still talking thinking no time had lapsed, once we were on holidays we had gone out for a short walk when we returned to our hotel I was talking to my husband while he went to the reception for our key he said I left him walked over to a chair curled up and slept for nearly 2 hours he just sat there and waited cos he knew I wouldn't wake and obviously needed to sleep, but that's not happend in a long time and had forgotten all about it until reading what you wrote.

    Keep your chin up Deena your doing well

    Gentle hugs leona

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    • Posted

      Hi Leona i was so shocked you replied to my message, and thank you for taking the time to read it and answer.i have got swollen legs and feet at the moment, the pain is in my back so i dont know if it is my back complaint. but i saw my doctor who said just REST that is all i ever get told by them they just dont have a clue. he said my perscription would be filled on thursday come thursday nothing then my husband went down to the chemist on friday to complain as i am in so much pain, old to be given a bottle filled with 6 measures and told that should last me until monday.

      i saw my husband off to work at 5.30am made his flask and went back to ned i woke up about an hour ago and was so confussed i didnt know what time it was weather my husband had gone to work if my son was still in bed or gone to work, it is horrible i looked at my watch ,and tried to piece it all together my husband had gone i searched my brain and remember having my breakfast but i really do not remember my son going.it is mad, (or i am) lolhow are you today are yo in remisstion or are things still active for you? i got told to think of your self as having a full spoon of suger at the start of the day, showering drying your hair and getting dressed is half the spoon gone then you must make the other half last the day,when the energy dropps you are feeling tired and worn out i tend to last 2 hours and sleep for 4 and that is my days normally . but with my not being able to walk i am just stuck in bed.

      i am a great film lover but i keep falling asleep through them , we went to see 2 fast and 2 furious my husband said he enjoyed it but it was extra loud and he also had the hump with me as i fell a sleep and snored my head off 3 times, obviousley not to loud for me.;-)ill let you go and hope you have a good weekend. Dee.

       

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    • Posted

      Hi Dee, you make me laugh 😃 but on a serious note you sound very poorly, Dr's well mine is the same, say no more,

      I enjoy a good film but I either glaze over or fall asleep even if I'm really enjoying it, o well it's an hour out,

      My son has now put films on a memory stick so I can watch them again,

      My husband went to work this morning so I dressed got on a train and went into town, bought some new cushions and a throw,

      Struggled home but my lounge feels like a new room without decorating,

      I hate looking at the same old things,

      This afternoon we're going to tidy my sons plot and give him a new plant to look at,

      I expected rain this weekend but the sun is out although cold and windy,

      You rest ask your son if he knows anyone who can put films on a memory stick for you,

      You take care and keep positive we are all here to support each other x

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