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Pamela b
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Discussion Starter · #1 ·
Hi
I am on a real downer just now.

I guess I expected that after a dx things would move at a pace and I would feel better but they havent.
I keep being taken on and off pred and up until this time it has worked but only at 20mg. Now it isnt. I am shattered, so weary. I also keep being sick, am so dizzy and also having faints at least once a week. I ahve ankles that are so swollen and am unable to walk 200 yds withoug sitting down.
I had addisons tests because my sodium and chloride was low and potassium high and cortisol low but that was negative. I also ahve to have a CT scan for lymphoma.
My legs and knees are covered in rashes.
My Gp wants me to take anti depressants because my mood is so low.
I am so against them, have always said I would never have happy pills, But she is nice and says my system just cant take any more and has broken down.She suggests Prozac ? Shall I give in ?
I just feel as if I am going around in circles allt he time, getting nowhere and just so isolated from everything.
I want to get out in the world and walk around but a few yaerds and I need to sit down
I sleep like a log in bewteen the sweats but wake so tired,

They just keep on telling me it will get better but somehow I cant see it ?

Sorry on a moan when so many are so much worse than I am but when will it get better and why do they keep looking for more complications ?

So sorry guys
Pam
 

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Hello Pam and ((((((hugs))))))

I can truly understand where you are coming from and I think many here have gone through exactly the same thing.

It is true that once we get a diagnosis, we sort of expect things to get better and to move on but, unfortunately, it often takes a while even a "long while".

I was diagnosed just over 2 1/2 years ago and it is really only now that I think (and am not sure) I have achieved some form of stability and balance. Meds have been upped, reduced, changed and it all takes so long - very frustrating. But, when I look back, I can see objective improvements even if life is not rosy every day.

I think what I'm trying to say here is that yes, it is hugely frustrating and we so much want to get on with life and think about lupus less but it takes time and a lot of working with the docs to get it right. Your meds may well be changed over the months - there is a lot of trial and error involved. My rheumy once told me that, as specialists in their field, all they can do is start of with basic disease modifying and anti-inflammatory meds (which may include plaquenil, immunosuppressants, pred, NSAIDS) and then it is very much a case of try until you get results. She said that it may not sound very scientific but that the disease is so complex and so different to each individual that that's all they can do.

It is tough to know whether to take anti-depressants or not. Often we fight against that until the last but sometimes they are truly necessary. Depression can be an important part of the disease process itself - it is not a lack of character on your part or something to be ashamed of but something you can't control. Anti-depressants can be very helpful in helping you cope on a daily basis with what's going on. They can also help improve the quality of sleep you get and can reduce certain types of pain (especially when you have fibromyalgia type pain).

I went through a very tough time at the beginning of this year and I did truly start to wonder whether I shouldn't ask for some anti-depressant help. Thankfully I pulled through and didn't need it. Perhaps it had something to do with new medication I was put on for neuro symptoms as when my memory gets too bad and fog, headaches and problems concentrating set in, it all makes it so much worse. In general my docs don't offer me anti-depressants as they know that my down periods are generally very short (a day or two) and then I bounce back - I tend to get "reactionary" down periods if I am having more severe physical symptoms but don't have clinical or deep-seated depression in itself. However, even if they don't tend to bring it up, I need to know that maybe someday I might need that help.

Sorry if I haven't been clear but hope it helps a bit,
more hugs :grhug:

Katharine
 

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Hi Pam, sorry you are feeling so low. I think we concentrate so much on getting a diagnosis, so that we can get treated. We get a diagnosis and some meds but we still have to live with the illness and its complications. I went through a terrible time after diagnosis.

It takes it toll on our emotions. A lot of people once they get the correct meds live 'normal' lives. Others learn to pace themselves and make the necessary adjustments so that they achieve a good quality of life.

Try to do at least one thing each day that you enjoy. Phone a friend, have a friend to lunch, a relaxing bath, read a good book, whatever you enjoy. I can't say whether you need happy pills or not. I just think we get to a point when we know deep down it is time to take them whether we want to or not. Only you know if you are there or not. You could try talking it through with a good friend or relative.

It will get better, hang on in there!!! Join us in chat sometime.

Take care

Deb x
 

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Pamela b
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Discussion Starter · #4 ·
Thanks Debs and Katherine

I think the problem is that I just keep getting more thrown at me every time I visit and naturally or not it worries me
They take bloods, find something in the bloods that is not right and try to find out why.
I find this scary as it is just another thing to take in and deal with. They are now looking at other things as well as the dx " just in case 2.
I cant talk to my family, i just keep going on as if I am fine although my husband is brilliant. The sadest for me is the total abandonment of my closest friend of decades. We used to talk every day and meet at least weekly. We have su pported each other for many years
( I was more supporter than supported due to a wonderful family ) and although I have never moaned about health issues ( honest ) she knew something was going on. When I told her what the dx was in may she has never called me, returned my calls, e mails and just pretends I dont exist. She now has a great life with her 5th husband and it is all wonderful and fun and I guess she wouldnt want it spoiling. All I said to her when she rang to see how I got on was " Well it seems I have this thing called Lupus which hopefully they will soon have r control and make me well again ". She said she was very busy and would call me later.
Since then nothing, I even wrote a nice card to ask if she wanted to meet for coffee, no response.
So she is lost for ever and maybe I did do something wrong, but I never moaned once about health to her although she knew I couldnt go the gym with her in the past couple of years.
So when you lose those you were so close to along with everything else no wonder I am down.
So sorry, too upset to go on
Pam
 

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Dearest Pam,

Let me start by saying I am so sorry that you are not well and you feel abandoned by your life long friend. All of this together certainly would make anyone feel very let down. I am happy that your husband sounds like a supportive man who stands by you. That is what people who love us should do.

As for the anti-depressant, why not take it? Why are you so against taking the "Happy Pills"? I have a friend who had the same attitudes as you towards the meds and yet every day she took other meds for other illness that she dealt with. For example, she is diabetic and takes meds everyday to control it. What is the difference??? Finally after much coaxing she gave in to the Happy Pills and let me tell you how much better off she is now that she gave in. She is a new person with new outlooks on life. It was the best thing she ever did and she now agrees.:wink2::wink2::wink2:

As for your friend that you feel abandoned you, I am curious, have you ever stepped back and taken a good look at your friendship with this woman? I mean really analyzed what she has done FOR YOU in the previous years? I bet if you made a pros and cons list of your relationship with this person the cons list would be much longer. If she were a true friend she would not have turned her back on you EVER.:mad::mad::mad:

My mother has a saying,........"If by the time we die we have 5 true friends then consider yourself very lucky"! I really believe this to be true. It is not in good times when we know who our TRUE FRIENDS are but instead in bad times. Anyone who turns their back on you at one of the lowest times in your life was NEVER a true friend to begin with. I would venture to guess if you thought long and hard about this friend you would find that she is a very selfish individual who really, through the years only cared about herself and what was good for her.

I have been where you are, sad and let down, feeling hopeless, left wondering why someone did something to me when they were supposed to be a true friend. Then once I really analyzed the situation I realized they were never a true friend to begin with. Hard lesson to learn yet glad I learned it none the less.

I am sending you gentle hugs and warm thoughts in hopes that you start to feel better soon. Everyday do something, anything that makes you happy. As for not being able to get around have you entertained the thought of trying to get a scooter to help you go long distances? I am sure that with your health issues you may be able to get one for free or low cost.

Keep us posted as to how you get along and know that your in my thoughts.:wink2::wink2::wink2::wink2::wink2:
 

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Hi Pam, it is hard when we are constantly dealing with health issues, it can seem relentless. I am glad you have a supportive hubby. I can understand you not wanting to burden your hubby, thats why this site is so great it provides an outlet with people who understand.

Since being ill, I have found out who my true friends are. I have also grown closer to people who were just acquaintances. I know it is hard to lose a friend but she has left a space for a new friend who truly appreciates you. Maybe she can't cope with illness, if she is important to you, I would still send her the occasional card, she might come round.

Keep posting and let us know how you are doing.

Deb x
 

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:hug::give_rose: Hi Pam,

I am very sorry to hear about your not so good time at the moment.

It sounds like you have a brilliant husband.

As to your friend..I dont know what to say to you to make the loss of her friendship any easier...I have noticed that since my health problems have now been aired to all family and friends that the ones I thought would help would do so..but how wrong I was..the ones that have stuck by me and been very supportive are the ones I would class as "friends". Yes it did hurt but I decided that I needed all my energy and focus on my health not to worry about what I know class as "shallow friendship".

As to medication, as you may know from a previous post I did some time ago I hit rock bottom and I had to up the dosage of antidepressants I also saw a Counsellor who was fantastic...Im not saying that you will get 100% better but I have noticed a big improvement in my outlook. Please discuss this with your Doctor..take as long as you need with your Doctor when you have your appointment and please do not worry about people waiting to see the Doctor after you concentrate on yourself and remember they would do the same.

Asto getting around have a look on ebay for an electric scooter, my hubby bought me one last week and Im having a great time go out on my own..my friends (those who have stuck by me) have christened me "Penelope Pitstop" as I also wear a neck brace when Im out..I have told them I will get a wire coat hanger and wrap a scarf round it and put it over my neck brace to look like an old pilot....hubby making me a sign for the back "The Stig's other vehicle".

You are in my thoughts and prayers.

Sending you :grhug:
 

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Pamela b
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Discussion Starter · #8 ·
Hi

You are all so very kind, I am so pleased I found this site and you have been so helpful

I think fate has intervened as yesterday afternoon out of the blue a friend called to see me as she was passing on the motorway. We cried and laughed together. We shared old times ( we started showing dogs together, she still does ) and good times and it helped. I also talked to her about pills and she said try them but she also made me realise that it is the name Prozac which is also putting me off. She suggested that I talk to the doctor about a milder alternative and that she knew me well enough to know I do need some help and also she would have gone under long since with all I deal with and have lost.

So maybe my so called best friend is gone but others are there and always will be.
Thank you all so much
Pam
 

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How nice for your friend to stop in, hang out, spend time and reminisce about old times. It is always good to do that with a old friend. I just did that myself the other day and it was certainly a spirit booster. We laughed for 2 hours.

I am happy to hear that you are more accepting of getting on a anti-depressant and I know you will feel soooooo much better. Talk with your doctor and pick one that works best for you. Cymbalta is very good and also helps with break through pain.

I know how you feel Pam with not working, I feel the same way. All my life I worked, brought home a pay check, was productive and felt like a responsible adult. When that gets taken away from us it is a hard pill to swallow. I live by 2 sayings now and I remind myself of them daily.....

It is what it is!!!!

Everyday do something that makes you happy!


Please keep us posted and let us know how you get along.
 
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