Is it just me?

Since being diagnosed in August 2011 I'm struggling. I really cannot see the point, I've seen a lot of people say take one day at a time but to me that's just a polite way of saying that I have no future. I am on high strength anti-depressants but they don't stop me feeling this way. I'm angry and hurting and it feels like my life's been taken from me. Is this just me?

[Acorn1]

No. it's not just you. But take it easy, you've only just been diagnosed, you need to get your head around having a chronic illness and that takes time. It also takes time to change your lifestyle to accomadate your disorder. Set yourself a time limit sometime in the future, say 6 months, then just focus on the things in your life you can change to make dealing with the symptoms better. Do the research, think about the foods or activities that may trigger your symptoms. You have to learn to live along side this disorder but that doesn't mean it needs to take over your life or even ruin it. I'm sure in 6 months time things will feel better. Don't forget the medication for your disorder can also make you feel depressed, as can this time of year. I try not to blame my Lupus for everything that goes wrong in my life, I have to take control of my own decisions. I used to be a party animal with fags, booze and late nights but thats all gone now unfortunatley, but I'm slowly learning to replace all that with things equally as satisfying! I was only diagnosed in January this year, the biggest lesson I've learnt is to be patient and not rush things. I really empathise with you, there is light at the end of the tunnel, don't give up hope.

Hope you're feeling better soon.

Alison x

[Sue2803]

It is so hard when you are first diagnosed, especially as so many people dont even know about sle and aps. You feel like you are fed up with explaining what is wrong with you and then you get comments like, well you look well enough. It is all perfectly normal to feel how you are, just give yourself time to come to terms with it. This site is great because you can vent how your feeling and there is always someone to talk to and empathise with you. We all know how you are feeling, your are not alone.

Thinking of you and big hugs hun x

[Jude65]

When I was diagnosed 17 years ago I went through a patch when I felt very low. To me it was natural and necessary to grieve over the loss of health and the loss of the life I had taken for granted before. I cried and felt sad inside for about a year. I didn't see it as a medical problem that needed anti-depressants. I had to find the things that I could do, not think about the things that I couldn't do any more. At times it is hard but these things are put there for us to rise to the challenge and eventually to see the good side. I maintain now that I am a much nicer person since suffering this awful condition and am more understanding and patient with others. Give yourself time to accept things but at the same time think what you can do to take control of and improve your situation. There are so many people who have chronic illness who learn to cope.

Big hug

[helen3d]

hi i to was diagnosed in sep this year and can totally relate to how you are feeling life was better before this thing we have had a name i still find it really hard to come to terms with but hey we will get there we have to what other choice is there we cant give up what would that prove. we cant beat this but by god we can give it a good kick in the ass and say this is my life you will not totally control it. i went through the scared stage quite quickly really then got my stubborn head on it wont win. i have bad days more bad than good but i refuse to give up yes my life is different now but at least im still here it will settle down for you ( it has to because thats what everyone tells me) i think one of the hardest thing about lupus is explaining to people what it is as you look fine so how are you ill. that for me drives me nuts thet look at you as if to say well your ok when we all know were so not

trust me i know how you feel you will come to terms with it i promise

take care

love helen xx

[Kentish_Man]

It is hard when you are first diagnosed and you go through all sorts emotional changes. From the why me, to anger, to denial but not necessarily in that order !!

After 6 years I am still having problems living with it, mostly denial. On the rare occasions when I feel well, I try to do things that I used to do, but know in my heart of hearts that I cannot, and suffer accordingly.

The main thing is to not give up (as to give up is to give in) and just find your limits. I WILL fight this illness and although I have made some changes to my life, I will not let it rule it completely.

It is a great shame that we are not able to get counselling and other types of help when we are first diagnosed, as I am sure that it would help greatly.

When first diagnosed I was told that, without proper treatment, I had 18 months left to live. Yet got no help in any way with dealing with this information. I was told by the specialist and then told to come back in a month's time when they would start the new treatment.

Yes, depressants help, but for me it was my own will that got me through it. I found inner strength which I never knew existed.

Ask your GP for counselling, if you have a good GP he will send you for some and lets be honest, it is far better to have counselling then rely upon medication as we take enough of that anyway !!

You DO have a future, but how your future pans out is up to you. But do not look for a quick fix. Like a lot of things, it takes time.

Good luck and I hope that it all works it for you.

[Hidden]

Thankyou all for your replies. I understand that lifestyle changes need to be made and I need to not let this rule my life but I have a 6 year old disabled son that needs me to still be the mom I was before, I also have a partner who is disabled who suffers with bi-lateral osteoarthritis of the hips and relies on me. I've never been a party animal or the most active of people so it's not that I miss the excitement or anything, it's that it feels like every day there's something else wrong or I find something else that I can't do and it's hard to come to terms with something that's different every day. With regards to explaining my condition to people, I can quite honestly say that noone has ever told me that I look fine, in fact I have had strangers have asked me if I'm alright as I look so ill! Also, I was on the anti-depressants long before my diagnosis of SLE so they are not my response to my diagnosis, I mentioned them purely to show that they are no help to the way I am feeling. I seem to be constantly angry and frustrated and I have no way of venting this because I struggle with having the energy to get day to day things done let alone take my anger out on something! I'm sorry if to some of u it seems I'm wallowing in self pity but that's not the sort of person I am, I've always been strong and stubborn but lupus seems to have taken the fight out of me. It is nice to have found this site full of people to talk to that understand how I feel and I appreciate all of u taking the time to reply when I am well aware that u all have ur own problems to battle. X

[Tamsin]

hi there, you really sound like youre having a rough time at the moment, things will get better, it just takes time, and this is a great place to vent. Just know you are not by yourself. Without wanting to point out obvious things, have you asked about having some help in the house - im not sure how the system works but with yourself and your partner and son surely there must be some kind of help available to you. With filling out forms the CAB

have been extremely useful in the past... Stay strong x

[Caroine]

you will definitely feel this way.I remember my own ordeal when I was first diagnosed in Feb 2004,it took me 3months to come to terms with it may be because I am inclined to the health area,supported and worked with persoin with life threatening and limiting conditions.One thing that helped me get through is support and talking about how I felt to my family back then.It is never easy and what you are feeling is not any different from anybody.Just take every day as it comes and be more optimistic.I guess you are male it is harder for you to accept especially if you had a very active life.Remedy, when you feel really low go be in the midst of people,try to have a laugh.soon it will become a part of your way of life and you will cope with everyday challenges as it comes.I had my two children diagnosed with severe SLE but I remained optimistic.Good luck I hope you feel better.My own thoughts here taking anti-depressant is just a temporary remedy you have to come to terms with your state of health.Take care and keep well

[janiceray]

I agree with all the above,

I know you have a lot on your plate and there is no one to look after you!!

you feel you are at the bottom of a pit and cannot get out,most Lupus people have been there,you have this wonderful site to vent your anger and to find you are not alone you can share it with us ,there is also lupus contacts out there who will listen to you also. if you need to hear a voice.

Try if you can to take one day at the time, as it does not help your lupus if you are stressed out.It took me 1 year to get my head around having Lupus.

Try and stay positive & take care

Love & Sunshine

[NeeNaw]

Hi ...... boy can I relate to what you are going through. It is normal, you are a whole mix of emotions, you don't know what to expect and everyday it's another symptom, which most doctors will sat "it's your lupus" ....... no matter what the life was before, you are still grieving. You are worrying about all the things that you cannot do, the lack of energy, and the fact that you still have to care for other people, when you clearly need someone to care for you. The hospital that I am normally admitted to deals with patients who have lost limbs, and when in physiotherapy I watched a young guy trying to build his upper body strength as he had had 2 legs amputated and I thought, I'm grieving for my life and here's this young man, whose whole life style has drastically changed, so why am I feeling so sorry for myself? Self pity just perpetuates and is defeating the soul. I would also say that your role of caregiver being compromised, is causing you to worry further which in turn will keep you in flare. There's a saying that you cannot reach for the joys of today whilst holding onto the junk of yesterday ..... and I find this so true. Your anti-depressants may need adjusting either in dosage or a different med needing to be prescribed. I will not lie, it's tough, but it's getting a handle on it that is the key. Learn how to split up your tasks, and your home may not sparkle as it once did, but there are no house-keeping police, love can live in a home whether it's clean or messy, and I know that I prefer to have love in my life rather than stress out about the daily tasks that need done. Lots of love and luck and you will get there, it just takes a bit of time, and it is also hard to be on the other side of the fence when you were once the caregiver yourself. We are all proof that there is life after lupus. x

[helentad]

Hi, Firstly you need help. My GP was great and refered me on to social services but this you can also do yourself. I was diagnosed after i had twins 5 years ago due to the trama caused by an infection from the c-section. We muddled along with family help for as long as we could, well we survived really.

We live in a surestart area and they paid for the boys to go lo a local nursery 2 mornings a week and also paid for it which gave us time to sleep or shop or whatever we needed to do.

My husband is classed as my carer but social services assesed my needs and have said that I could have 20 hours Mon-Fri and 5 hours at the weekend 2 different people. I was refered to a company called Penderels who support people that get this money from the council, It's called DIRECT PAYMENT. You tell them what you need they deal with advertising the post then help you interview for your carer you fill in the time sheet and send it off and they send wage slips ready for you to pay your carer, its really great (maybe a bit daunting at first but you soon get used to it, if you want to talk give me a shout). Its sounds like you should already be on this with your husband and son and if your not you really need to call your GP or social services asap. Its not an overnight process but its well worth it.

Is your son involved with any groups for challenged young peopel in our area (Flintshire in North Wales) the group is called Daffodils and they have craft days, parties days out and all kinds of things. Also in most areas disabled groups are set up that are normally weekly and most provide bus inc wheelchair transport at a small cost, your social worker or doctor and even the CAB will know about these.

Lastly I found a website called but you dont look sick .com (i think) they have a story called the spoon theary that i read and found really helpful with my coping at the beginning, basically you have 12 spoons to last all day and when you have used them then you have used all your energy, a poor short likeness but it is really worth a read and also print it out for your family to read so they get an idea as to what your life is like. Its a question of prioritising do I really need to hoover today or do I play with my son for an hour when he comes home from school, personnally I choose playing with my sons, thats the basis of the spoon theary.

Hope that helps and hope I have not waffled to much.

Much respect for you and love to your family. Helen

[chrisj]

I know exactly what you mean about losing the fight to keep going....feel the same way myself but you can learn to pace yourself. I know you have responsibilities, try and see them as a purpose to keep going. Have you spoken to your GP or social services about getting some help and support? You've nothing to lose by talking to someone and it sounds like you need some help. Wish there was more I could say or do....

[chrisj]

Just read Helens post and there's some good advice there