Tired all the time

[mistybuckley49]

I have lupus & nobody understands why I am tired all the time & my body hurts.

[Hidden]

I totally sympathise with you,if we look reasonably ok people think we are alright.Ive found showing people articles about Lupus a bit helpful but still doesn't make people understand 

[lupus-support1 Administrator in reply to Hidden]

I agree. I wonder how you are doing?

[Hidden]

Best wishes to you xx

[creaky]

Yes, I find it quite difficult to admit to people that I don't know well, that I have a problem. 

Not helped when you get, "well you don't look ill"

[lupus-support1 Administrator in reply to creaky]

You are not the only one to have had this experience. This can be a way of denying you are ill. Some people cannot cope with someone who is ill.

[angbed]

I know exactly how you're feeling as I feel that I have lost the past 3 years due to feeling mentally and physically exhausted, my body feeling stiff and achey every morning. After being diagnosed with Lupus I decided to change my way of living as I feel II can't function before midday. I can't afford to retire so I work in the afternoon.        Hope you feel better soon.

[lupus-support1 Administrator in reply to angbed]

This is very hard. It is important  to listen to your body. Many of us need to rest in the afternoon. Even if this is something you do not want to do, this may be necessary in order to work, as you have to do?

[suzierwp330]

Totaley pees mo off .especially when you feel so ill 

[mistybuckley49 in reply to suzierwp330]

I know & my husband doesn't even understand what it does to me I just got married two Mo's ago & he says u can't be tired all the time but I am tired all the time & my body Hurt's real bad especially in the mornings & late at night it effect's my life I have no energy.

[suzierwp330 in reply to mistybuckley49]

Same here I spend many days doing nothing at all and still have no energy .Wish we could all feel good for a short while at least 

[lupus-support1 Administrator in reply to suzierwp330]

Yes - as I said, this is reported by most people with lupus. I wonder how you are at the moment?

[suzierwp330 in reply to lupus-support1]

Hi I'm not to good at moment feel really run down ,keep having muscle spasms in my back not good I carnt even reach it to hold it ,Was crying with it yesterday .Needless to say another sleepless night .How are you ?

[lupus-support1 Administrator in reply to suzierwp330]

I am sorry to read this. If you want to talk to me in a more private way, please register with the LuPUS MB.

With good wishes,

Ros

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

Lupus is poorly understood. Unfortunately, even family and friends may not understand and cannot give you what you need: empathy.

I wonder whether you can sit down with your husband and try to explain to him how lupus affects you. You say you have been married for only 2 months, which means you are trying to get to know one another as a married couple. I do not want to pry, but I do not know whether you have had a diagnosis of lupus for a while or whether your lupus is very recent. Having a chronic disease can place an enormous strain on a relationship which is why I think it important for you both be able to talk. Your husband may be in a state of shock; or he may feel very helpless and powerless and unable to help you. It is very hard to see someone whom you love suffer.

If you cannot talk to one another about your feelings and fears,then perhaps you could go and see a therapist who may be able to help both of you deal with your having lupus. It is often said that although only one person may have a diagnosis of lupus, the entire family suffers from lupus. Talking to one another - really talking and putting into words your feelings, fears, expectations, disappointments is very important.

I feel you both need help here. One aspect is to help your husband understand the physical aspects of lupus and the medication and treatment you need. The other aspect is the psychological aspect and how this affects you and him. Shutting down or not talking is very problematic. But, sometimes opening up can also feel worrying as well.

We have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available. 

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden. 

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/". 

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up. 

I look forward to talking with you more! 

Sometimes we need to talk to people who understand and who are not family or friends. 

With good wishes! 

Ros 

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[mistybuckley49 in reply to lupus-support1]

I was diagnosed with lupus at 11 year's old my mother also has it but she didn't get it until age 18 I am now 37 years old & the more older I get the more it affects me & no matter what I do I am always tired & real moody & don't want to go anywhere & it irratates my husband & my kid's that I have no energy to do anything.

[lupus-support1 Administrator in reply to mistybuckley49]

It sounds to me as if you need help and support. The first thing I would do is to see your doctor and ask his/her help.

I also think that you may benefit from talking to someone - a counsellor or therapist - as this is badly affecting you and your relationships with your husband and children.

Your "moods" may be the result of lupus AND your being in this awful situation where you are ill and can't do what you want to do. It is understandable, for example, to feel all kinds of feelings eg depressed, anxious, guilty and so on.

[mistybuckley49 in reply to lupus-support1]

My husband tells me I don't know & don't understand nothing about my illness so they is no talking about it to him.

[lupus-support1 Administrator in reply to mistybuckley49]

I think it is important to try and teach him about lupus. Perhaps your GP (Primary Care Physician) can help?

[Sbcabs]

I know how you feel! It is so frustrating.  I have been living with symptoms for about 6 years and had been classified as "mixed connective" until recently (Lupus now).  My husband didn't seem to believe anything was wrong.  He is just now starting to understand. It would actually seem as though he would be mad when I would fall asleep... 

[lupus-support1 Administrator in reply to Sbcabs]

Mixed Connective Tissue Disease is a confusing title for doctors and patients. In effect, it is a lupus variant condition and is treated as such by lupus specialists. It may mean you have features of more than one autoimmune/connective tissue disease such as lupus and myositis. Your lupus specialist should have explained this to you. It would also be a good idea for your husband to come with you so the doctor can explain your condition to him.

[Sbcabs in reply to lupus-support1]

Great idea!  Mine is looking to be lupus/rheumatoid. Not a great combo, but managing.  Fortunately, he has started to understand more yet I think he is in denial...he asks if i'm tired from a busy day, "or the pathology" 

He is trying, can't complain!

[lupus-support1 Administrator in reply to Sbcabs]

Nothing is a good combo! You may well be right. Many go into denial especially if he feels helpless and powerless to help you. Many men feel that their job is to look after their spouses but when something like lupus hits, he is also affected.

It is often said that although only one person in the family has lupus, everyone suffers from lupus.

Please feel you can talk to me any time.

With good wishes,

Ros

[Sbcabs in reply to lupus-support1]

so true...he is a fixer and rushes to fix or help me in anyway he can.  He can't "fix" this, but he is learning to help in small but wonderful ways. My little one's also don't understand, but they are learning.  It does affect the family.  And, I am not one that likes to slow down, so it has been a challenge for me as well.  We will continue to adjust to a new way of life with a few more rest stops!  Thank you!

[lupus-support1 Administrator in reply to Sbcabs]

Always remember, you can come here any time, or contact me at:  roz [at] [lupus-support] [dot] [org] [dot] [uk]

[Hidden]

How am I ,nice to have somebody ask me.Ive never given up because I haven't been able to.My husband is 76,been through,kidney op,2 heart attacks,mini strokes,he has diabetes,atrial fibrillation,Parkinson's and now mild cognitive impairment and Vascular diamentia,myself 8 mainly abdominal operations,angina,sjogrens syndrome,lupus,osteoporosis,osteoarthritis,fybromyalgia,latest being bladder problems.I mainly get through thinking there are so many people worse off than me,especially my 56 year old sister who has bone marrow cancer,ironically my 94 yr old mother and her sister my  91yr old aunt are still alive and healthier than we are.Our marriage vows were in sickness and in health,I help my husband as much as I can,it's hard and before too long may have to have help,sometimes I really find life is such a struggle especially when I'm in a lot of pain or very fatigued,sorry if this sounds like one big moan,I've been a bit low and writing this all down has helped,my very best wishes to everyone,soft gentle hugs and love to you all xx PS this forum has helped me so much as I know it has so many people,a big thank you to the administrators.

[mistybuckley49 in reply to Hidden]

I am so sorry to hear all u are going through.

[lupus-support1 Administrator in reply to Hidden]

You are NOT "moaning". It seems to me that you need some time for you and this includes having a safe space to think and talk. This is not moaning but something vitally important to our psychological help.

Thank you for your kind words. We also have another website where you can talk more privately. It is not a sign of "moaning" or weakness to talk. As you say, you have found writing this has been helpful and perhaps this is telling you what you need. Being kind to yourself is necessary so that you can manage your condition and your husband's physical and mental health.

With good wishes,

Ros

[weg1]

i understand x

[Hidden]

Thank you xx

[Hidden]

Thank you so much Ros,so nice to read what you have written,I shall try and be more gentle with myself and it's so nice to converse with people who understand.Forgot to mention I also helped my husband through bladder cancer from which he luckily is now cancer free,he certainly drew the short straw when good health was handed out.Thanks so much for your support,so much appreciated,you take care,best wishes xxx

[lupus-support1 Administrator in reply to Hidden]

Many lupus patients are so tough on themselves and you are not an exception. I meant what I said. I am always available here, on the LuPUS Message Board or my email address:  roz [at] [lupus-support] [dot] [org] [dot] [uk]

[Hidden]

Thank so much Roz,lovely to know I have you as a back up,soft hugs xxxx

[angus50]

Hi it must be so frustrating when people don't understand but all you can do is give the information and hope some of it sinks in. My thoughts are with you take care.