Had enough

I'm 23 and have been diagnosed with Lupus just over a year. I had a breakdown today. I feel like I am getting worse and worse, Today I have a migraine my hip hurts my elbows hurts, can't write and having trouble breathing And I have sores on my fingers and I have to wear stupid stickers. Does it get any better or is this what my life could be. My mum is really good but sometimes she says I'm going through this with you but if she's finding it hard imagine how I feel. How am I going to find a partner and have a family if I'm too tired and too ill to get up and meet people. Grrrrrr I'm just so angry and pissed off.

13 Replies

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  • It DOES get better Xliddy. I've been to the darkest places imaginable, & I mean this mentally not just physically, with my lupus. But I am feeling so much more positive now. You've got to find the right meds & lifestyle for your illness. But this takes time, & lots of trail & error. Set your self small goals & try not to look too far ahead, these are my ways of coping.

    Do you know any fellow lupies to meet up with for chats & support? This site is a good starting point. Also, you don't need to be a member of lupus UK to go along to their meetings & groups. I've just come back from my local meeting, where I've made some lovely new friends, & heard some amazing stories of hope, courage, & survival against all the odds. Oh, & one wonderful love story of how a lupie met her partner. So there is definitely hope for you yet.

    Look after yourself, & keep in touch so we all know you are OK. You are not alone in this, & we do know how you feel. XXX

  • Hi, sorry to hear your so unwell. What medications are you on?it is a tough illness to cope with but things will get better. Getting on the right medication helps. I am on mycophenolate and prednisolone and don't have the extreme pain anymore or swelling and my energy le els are somewhat better than they used to be. I have tried a few natural remedies on earth clinic that have helped. Obviously be cautious with e everything new you try. I always start with very small amounts to see it i react. Try not to worry too much about the future. Take one day at a time. People who really love and care about you will do so whether your ill or not.try to stay positive..i know its hard. Read books that inspire. Meditate. Write a journal. All these thinvs help. Illness is hard espexially when your young but it will make uou a stronger person.love and hugs x

  • Hi

    Try not to feel too downhearted my friend. we have all been where u r now. But it will get better. Just tell yourself that `It will not beat me` You have to make a friend of your `wolf` I always think of it as running with the pack rather than running from it. I mean that litterally too I am a runner. Had Lupus for 21 yrs, I wish I`d had this blog in my early days, I was so alone in those dark times, but you have us all for help and advice and we all can share our experiences. I found reading inspirational stories helped me immensley stories like Jane Tomlinson, Kate allatt, Carl Brashear,Oscar Prestorius. all these people have beaten the odds and triumphed over adversity. If they could do it so can we. So come on lass put your boxing gloves on and get ready to jump in the ring and fight You will win if you put your mind to it. Find out who lives in your area and meet up for a chat. I live in Portsmouth if i can help at all let me know. Big Hug Debsx

  • Thank you lemonface, I been diagnosed with Uctd for a while now and not had a good couple of weeks with developing choking feeling, tight chest and feeling weak so feeling a little sorry for myself but read ur story and where I give up because I get so tired after exercise and thought I wouldn't be able to get fit again because of it I realise that maybe I just have to stick with it? Thanks for the inspiration cos I hate the thought that I could end up on steroids :)

  • So sorry to hear how low you are but afraid to say I can totally relate as very low myself too although I have no diagnosis yet!! I am also 23, I have a 5 year old son and a partner. don't feel too downheartened that you dont have a partner to start a family with. Concentrate on getting yourself in a more positive place and sorted with the right meds (if your not already) and the rest will follow. You will find a partner that will be with you regardless of the lupus. It may take time but for now concentrate on you. Make the most of only having yourself to look after as when you have children it becomes a lot harder to take care of number one ( I mean this in a nice way, just try not to think of not having a family as a negative right now, think of this time as getting yourself stronger mentally). Good luck hun and remember we are all here if you need to get things off your chest xxxxx

  • As megs says, concentrate on the here & now & getting u'reself in a good place first, the rest will follow, but the most important thing is 4 u 2 try & come 2 terms with things in u're own way. 2 echo what every1 else has said, u aint alone chick, I think I can speak 4 the majority of us when I say we've all been where u r, things will get better my lovely & u will have better days ;0)

  • You are young and need to educate yourself about nutrition and alternative therapies. I believe this is your only chance to improve your health. I am 52 an have been living with lupus since age 16. When I was diagnosed I did not have the benefit of the internet and and all the nutritional knowledge there is today. I believe if you have only had lupus for about a year you can make vast improvements if you find yourself a good biomedical doctor, that is one that will look at your nutritional status and possible food intolerances.

    I myself am not able to tolerate dairy and found out some years ago that I was very deficient in zinc. Had I known this much earlier I believe I may have not have suffered as much.

    I am very much in favour of alternative therapies. When I was first diagnosed I was determined to get off the damaging medication (prednisone- would have killed me by now) and look after my own health. I did a lot of accupuncture and chinese herbs and ate only whole foods as well as took supplements such as vit c magnesium ,zinc later.I was able to stop all meds at age 25 and have not taken any since. Lupus can not be cured but you can slow it and live a relatively healthy and pain free life if you do as i have suggested and do try to avoid stress as this is always going to make you worse.

    To make my point very clear, when I was first diagnosed at age 16 I was a lot sicker than I have ever been since. Only by seeking out alternative therapies ,nutritional knowledge and a good biomedical doctor for support with the right supplements not meds have I been able to live pain free and defy any specialists prognosis. As well as not need to see a specialist.

    I found my soul mate at age 25 married at 30 two beautiful boys, now 19 and 21. You will find love and happiness just focus on health not illness. Please research what naturopaths suggest for lupus. I firmly believe the most important thing you can do at the outset is stop eating dairy, eat lots of fresh fruit and veg cut back on wheat (bread) ,have good quality protein. Please take zinc,magnesium vit c( as calcium ascorbate) a good probiotic and fish oil. Very importantly try to find a biomedical doctor who will look at your nutritional status and

    once you start to research and learn about healing and good health you will feel empowered and much more positive about you future.

    I know my advice is very different from what others will tell you especially those who are members of lupus groups and doctors.Medication only masks your illness you can do better and will if you search for answers as i did. Dont chat will people who identify as lupus sufferers on meds- you are not your illness. Focus on other things that you enjoy.

    I wish you all the very best of luck

    Kind regard

    Lisa

  • It is an uphill battle but you learn to change te way you do things I am a photographer and used to carry loads of equipment around with me now I just carry a small camera when and if I am able to go out now I just concentrate on studio work it just means adjusting and doing things when you can this week I've done nothing because of the pain and major migraines but next week I might be able to do a bit more and yes we all get angry at times and frustrated with life but I've learned that I have to adjust with my illness and I'm trying not to give into the illness to much I've heard lots of people say "I may have an illness but te illness hasn't got me" but do try to live your life even if its only one day a week and if you meet someone if they like you that much then they will stay

  • Everyone on here can empathise with you, we have all been where you are now, it may not seem it but you will have some good times in the future. Its really hard but you have to tell yourself that there is someone worse off than you, (hard to believe sometimes, I know), but try to stay as positive as you can. Is your GP easy to talk to, mine is great and she helps a lot when I am really down. Are you taking any anti depressants, no shame in it, I take them, just takes the edge off and helps me cope.

    Good luck hun, always someone on here you can talk to, anytime of day or night. Don't give up.

  • Thanks everyone, I know I'm not as bad as some people. I am having acupuncture every week and herbal meds. I am also on anti depressants. Does anyone else see a dermatologist and rhumy at the same time?

    Adornal where do I find a biochemical doctor?

    Thanks everyone. I dnt know about all of you, but I doesn't help people saying it'll get better unless u know they are going through the same as you.

    Thanks for listening to my moan. Xx

  • We are all in the same boat, but yes it is good to see you are not alone. I have a rhuematologist and a dermatologist at the same time as I was diagnosed LUPUS and photosensitivity at the same time. I am very sick at the moment and like you very down. But I'm trying to stay positive and keep going. I am learning every day what I can and cant manage. But it is good learning about the vit C and zinc. my GP told me zinc is bad for me but it was the only thing helping me with my mouth ulcers. I take omega 3 fish oils and have vit D and calcium for not being in sunlight too. Speak to your GP tell them how you are feeling. And like has already been said it is better just to speak about it.

  • Have you had any counselling? My daughter is 21 and was diagnosed a year ago. She saw a counsellor and I think it helped having someone to talk to who didn't know her. She also sees a rheumatologist and a nephrologist and she did see a dermatologist at one time. Take heart though, my daughter now holds down a full time job and has a social life. Lots of love and spoons to you xx

  • Bless you, my heart goes out to you, wishing you so much strength and hope for the future. Everyone has already given great advice so all I can say is sending you a big hug and so happy that you have a supportive mum too xx

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