Does anyone here feel so overwhelmed by everything that is happening that you may not necessarily want to kill yourself (don't want to hurt the ones you love anymore than you already have), but you spent a lot of time fantising about it?
My husband, family and myself have had such a difficult 18 months, I had three heart attacks last year, the second of which I would have been a gonner if my husband wasn't at home. Lupus has attacked my heart, there is no furring, it wasn't a blood clot clot etc.
I've been diagnosed with extra issues since (fibro, EDS, frontal lobe epilepsy, hyper mobility). I used to be fit, healthy, able to hike, walk for miles and was crazy strong for my height and build. I was a sponge for information and learning new skills, I've lost all of that, I'm a shadow of who I was, I feel like a part of me has died. I don't know who I am any more.
I'm 36, I feel so awful that there will come a time when my husband will have to support me even more than he does now. I'm an only child and was brought up to be strong, independent and self sufficient. I hate that I need help, I feel weak and pathetic.
I know there is no magic answer and that any amount of pills can't fix this, but if anyone has had anything similar in their life, it's always comforting to know your not alone.
So sorry for the verbal diarrhoea and brain dump! Any advice or hearing of a similar experience would be so very welcome.
Peace and love to you all! And thanks for reading.
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Kimbobaggins81
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I am sorry you're having such a difficult time. I am 38 years old and I feel exactly like you. I couldn't even walk today and I can't see well from one eye. I have 11 years old twins and my husband recently has been a nightmare constantly losing his temper with the children. He said he finds everything very hard and I am pretty sure it is because I had to resign my job. He has to help me around the house and cooking etc. When before I was working and doing everything around the house plus still having plenty of energy. I am on antidepressants has I had suicidal thoughts but I don't act on it because I love my children too much. I don't have any family support. I feel so lonely, so worthless and I don't recognise my body. I just hate the person I have become. So I perfectly understand how you feel but we have to carry on for our children.
Well I'm certainly a lot more fortunate than both of you in that I've had no heart attacks or organ damage.
But I wanted to say that many of the symptoms that often attend all autoimmune diseases can trigger suicidal thoughts. I know that multiple symptoms systemic such as fatigue, constant tinnitus, a burning mouth, small fibre neuropathy, Raynaud's, IBS have sometimes led to me feeling defeated.
But I generally dust myself down after a flare and push myself onwards somehow - with the support of those who love me. People often tell me I look well now. I never feel as well as they think -but I find that at least smiling at this observation helps.
However I'm 54 now. When I was 36 - I was still undiagnosed with hypothyroidism and Sjögren's. I had a huge bald patch on my crown - looked like Friar Tuck- severe eczema all over my body and face - endless small but nasty infections and frequent episodes of bronchitis, eye infections, terrible teeth, bleeding skin, rashes on my face,a relentless reflux cough, gallstones and no energy at all.
At that stage of my life I can now see with hindsight that I was depressed. But I had three young sons back then, the oldest with Aspergers - and I just thought it was how life was. I assumed things would only get worse. Whereas, in reality, things are much better - psychologically at any rate. And I don't look like Friar Tuck with scurvy anymore either! I'm hoping to embark on a PhD on visualising invisibility (focussing on invisible diseases) now if I can get funding - after years of losing my way.
Are you having counselling at all? If not I really feel that this would help. It has for me at least. Being chronically ill is exactly like bereavement and sometimes bereavement requires professional input.
I have Sjögren's rather than Lupus. But when I thought I had Lupus rather than RA (which I was misdiagnosed with originally) - I sought a second opinion from a CTD professor. He explained to me that the reason he was sure that I didn't have Lupus - but had RA, Raynaud's and Sjögren's - was because I was in my early 50s and postmenopausal. If I had Lupus, by now I'd have organ involvement and if anything, things would be remitting he told me.
I don't know about this really as it is not always born out on here. But in my experience things change as our hormones change, as our lives progress. And if you can just hang in there and get the help you need, it may well be that you find a new you - not necessarily your former healthier body - but certainly the inner you. X
Your letter brought tears from my eyes. Can only reach out from here and give you a hug. You are not worthless. You are highly valued and appreciated even when it does not look that way. You are a beautiful human being and everyone here likes you. So please please don't give up. Things will eventually reright themselves.
Yes, it feels like I have been hit by a truck every morning - not just physically, but feeling disorientated at how my life has been transformed by the whole experience of this/these illnesses. It's not only losing the work that I found was so important to my sense of myself, but becoming nearly housebound has made it impossible to support my parents (my Mum is in hospital right now after having bowel cancer surgery), also means I now have almost no social contact, and cannot do any of the outdoor activity I used to love. the man in the mirror is more than 2 stones heavier than the one I used to recognise and my body doesn't do what I want it to anymore.
So yeah - I often wonder who on earth I am now. But whoever it is, I'm with you! xxx
I am so sorry you are feeling like this. It seems spectacularly hard given that many of us (me included) are very independent and self-reliant. Perhaps we put too much pressure on ourselves and therefore find it difficult to adjust our expectations downwards?
I wonder if there is a face to face support group close to you - that can be an immense help. Or maybe therapy would help? Building a different kind of life by having people around you seems important - not just family but people who going through the same thing.
I am so very very sorry that you are in such a dark place right now, and I am sure when you read replies, you will see that you are not alone in your thoughts, or place.
You and your body have had a traumatic time, very traumatic, whilst I have had no heart attacks, I do have organ involvement with my SLE, kidneys in my case. I also have several co-morbidities alongside my Lupus, APS, Mixed Connective Tissue Disease, Cluster Headaches, and more recently have developed breathing problems, gastrointestinal issues (bleeding stomach ulcers), the list appears to be never-ending.
Suicidal ideation, yes I have this, and am currently in my 2nd year of therapy (I have to pay privately, NHS no help available), and without a shadow of doubt, it is helping me. I used to feel ashamed of my feelings, not anymore, they are there for a reason, and now I understand that connection between chronic illness and depression, for me it was small step up from the heap at the bottom of the stairs, to the first rung on the ladder to some semblance of normal life.
To you now Kim, you should not ignore these feelings, please please reach out to your GP, do you have a sympathetic one? Are you under a Cardiac/Rheumatology consulstant> If yes to the latter, please please speak to them about your thoughts, I did this, and my Consultant was absolutely brilliant, she got me 12 sessions of therapy on the NHS very quickly, if you don't let your team know, they cannot help you. Now I know that not all Consultants are proactive, in that scenario, if you able, please turn to MIND, this is who I am having private Counselling with now, £40 an hour, so greatly reduced.
I understand totally how you are feeling regards the current 'you', prior to my diagnosis, I had a great job and life, and at the age of 38 lost my job as I became severely unwell. I do not know the person I see in the mirror even to this day, and I was officially only diagnosed in 2009, the weight gain due to steroids, the dark circles under my eyes due to poor sleep, and it was a horrible way to be feeling, so I reached out and got some help.
These days, and I appreciate my way may not resonate with everyone, but I was feeling more physically and emotionally exhausted fighting against my health issues, you know 'I will show it' type mentality, so I gradually set about learning acceptance, accepting my conditions, does not mean I like it, or that I have thrown in the towel, quite the reverse, I make it my business to daily have some element of control, routine became my new friend, I make a list of jobs to do, and if I only tick off one thing, like, I actually got up!, or 'loaded the dishwasher' that is one task I won. I also make sure I am always well prepared for my medical appts, because for me, it is important I have a say in my treatments, that small element of control for me at least, has proven to be vital.
Having a family, is immeasurably more difficult, I have no children, but I do have a fantastic husband, who was very lost for a while, I shut him out. Now I have let him in, men (sorry Paul), tend to be unable to multi-think, so I had to do this part for him, on a day to day basis, little things like turning tumble drier on, putting bins out, taking stuff out freezer for meals, all very menial tasks to you and I, but such a help to me, as time went on, my husband got to know without asking, what was needed, he tells me he feels as if he is useful, not useless, to me.
I am so sorry that this missive is all over the place, I just wanted to share, you have had a truly horrible time of it recently, and you as a family must all be in shock, and having to adapt to a whole new way of life, it is tough, but you know what, your description of yourself prior to your illness, your drive, though maybe reduced is still there, it comes out in your post, please believe that.
So my advice, reach out, and do not be fobbed off, you will be surprised how feisty one can become when reaching out for help, do not think reaching out means giving in, it does not, not all, it means you want to be in control of you. Perhaps have a family pow wow, all the family, to include relatives if you like, let them know how you are feeling, and let them know how they could help you.
And remember, here on Lupus UK, you are never ever alone. Love to you.
Yes, I can share this too. The change in what I used to do and what I do now is so very, very different. I avoid mirrors but if I catch sight of myself I'm really shocked. Someone remarked "how brave " I am ( they have seen me going downhill for over three years) and I found myself saying "I'm not brave, I just can't actually remember what it's like to be different" A few hours later that hit me hard - is that all there is ?
Over a year ago, I caught a flu-like virus that was going around. Most people had it for 3-4 days, and it was a fortnight for me. At times I felt so ill I thought I might be dying, and at the back of my mind I wished I was.
I think it's virtually inevitable to have "give it up" moments with chronic illnesses. See your Gp, don't feel any shame in making it clear you have suicidal ideas at times, and you should get some help.
If you are at a really desperate point and have the privacy to do so, the Samaritans can take a load off your shoulders. A listening, non-judgemental ear, outside your immediate circle can help a great deal. You do not have to be on the point of suicide to call them. They are very good at listening to the trials of physical conditions.
I live alone, which has pluses and minuses. I don't need to look after others (except the dog) but it can be very isolating too. I'm not naturally a very social person, but I do feel lonely sometimes.
Hi, embarrassed to say I'm also having loads of suicidal thoughts, none that I would act on but the fact they keep popping up (especially when the slightest thing goes wrong) is quite scary.
I had them before starting the hydrochloroquine, probably from the tiredness and depression that go hand in hand with lupus symptoms, but the medicine itself lists it as a side effect too!
I told my GP only last week of these feelings and I was offered counselling, I'm just going to try and battle through but it might work for you?
I think a lot of it for me is not feeling in control and not knowing what the future holds?
I'm a physically fit and independent woman and I'm slowly seeing the way things might be going, I have a son with mental health problems so at times it feels as though you are trying to keep everyone else's head above water when you're drowning yourself!
The main thing to know is that you are not alone in your feelings and that you won't always feel like this.x
Dear Kim, my boyfriend has a Lupus. I want you to know one thing about the feelings of "the other side" you are so afraid to be dependent on. If you love somebody and you are happy enough to share a life with that person, it is the greatest gift you can get. There is nothing in the world I wouldn´t do for him, just to make him happy and feel better and make no mistake - not because I am nice or something, it is actually pretty selfish, because without him my world would be lost. So please, do not feel that way about your husband, taking care of the person you love is just absolutely nothing for reward of being with you. If you feel like not knowing yourself, you always have a good starting point of being a person, who is very loved. That´s not nothing. I sincerely believe that things will get better. Just talk with your husband and maybe try also a psychologist, because the impartial person can be really helpful. Last but not least, please, do not forget, that the treatment is developing extremely fast during last two decades and you are so young, amazing things are waiting for you. P.S. If you were "a sponge for information and learning new skills", you at least had it and I am jealous, because I have "gold fish" in my head instead of memory my whole life! :O) Good luck, right now, I am sending you all positive energy I possess!
I am so sorry to hear that you are having this very tough time. You have already come through so much and it is not a sign at all that you aren't strong to ask for some professional help. I think that lupus not only damages our bodies and exhausts us physically and mentally causing indirect depression but also acts on our brains, changing the chemistry so that we are more prone to these feelings. As a lot of us are in the main years of parenting it's also a constant guilt trip thinking we are burdens to our partners and not able to be the mums we would have been without the disease. BUT I try to remember that we are still here for our children - we can still give them so much love and just by having a chronically ill parent, they will almost certainly end up nicer, more compassionate, more resilient people for it.
You say you feel weak and pathetic, that has been one of the hardest things for me too and I hate it. I was a sporty military officer who kept going on exercise for 2 weeks with a broken leg, got straight back on my motocross bike after being knocked off and breaking 4 ribs - I did these things (stupid of me I realise now I'm older and wiser!) because I was in male environments and didn't want to be dismissed as a 'weak girl' and now my body (and brain...) have betrayed the whole essence of who I was with a set of stairs regularly defeating me at the moment. However, I think all of us with this are actually really strong and if we learn to feel achievements for the smaller things we can hopefully adapt to the 'new us' and there will be some good, just maybe different from what we planned, times ahead.
The other important thing with lupus (probably the only good thing) is that it can and usually does go into periods of short term and long term remission and a good phase may well be just around the corner for you.
You are not alone, please speak to your doctor as there are definitely things that will help with these feelings, both medications and counselling. You don't mention your current lupus meds? It may be that they need adapting or more adding. I always finds a big dose of steroid works wonders not just on my lupus but also my energy and ability to cope.
Lots of love to you and please keep us updated on how you are
Hi, as you can see from all the replies your not alone with these thoughts. I felt so out of control recently, just unable to process things, I had exactly the same thoughts. Like you I have a son who is my world he gets me more then my husband who is more of a ignore it and it will go away type of guy. But I sat and thought about all the pain killers I had in my medicine draw and how easy it would be to just go to sleep. Then I caught myself and was shocked about how easy these thoughts came. The awful thing is it happened again and again I was shocked at how easy it was to fantasise about an easy way out. Good days it doesn't even occur to me. Bad days those thoughts slip back into place. I don't ever think o could act on them. I don't have much family (just husband, son and a brother), but I know they would all be devastated to even know this went through my mind and that's what gives me strength.
I know I'm not being very useful to you but I think that your very brave to ask the question and it's such a relief to know I'm not alone. So thank you for your honesty.
Thank you all so very much for you're replies. They will take me a while to get through reading them all. But I want to thank those who have taken time to reply from the bottom of my heart.
Just wanted to add, what thoughtful replies you have had from everyone, so nice to read about how others are feeling & for you for raising the question and sharing with us. Do talk to your GP, mine really is helping me come to terms with my changing world.
I dared the sun the other day and walked to the coast with my husband and saw 16 seal pups (and moms), it brought tears to my eyes, it has been years since I 'd seen them and to walked to this part of the coast. I went slow & steady & I slowed down at the end and rested afterwards, but well worth it. Like many here I use to hike all day and swim for hours even took up rowing a gig, what a change.... Sending you back peace and love, very powerful words, hug ML
Thank you for sharing your thoughts and experiences in this post. I'm really glad to see that you have had some great supportive responses from the community.
Are you currently receiving any treatment for depression? Depression is very common in people with lupus and can occur as the result of having a chronic, painful condition or it can be a manifestation of lupus itself. If your medical team are not currently aware of how you are feeling I would recommend discussing it with them. There are medications that some people find helpful, but you may also want to consider a referral to counselling or psychotherapy.
If you would like more information about lupus and depression, as well as details of other support services that are available, please download our leaflet here - lupusuk.org.uk/lupus-and-de...
It is great that you have this community to share with and receive support. We do also have trained volunteer telephone contacts. These are people who have lupus themselves and can offer a listening ear and some peer support. If you would like telephone numbers for any contacts to talk to, please let me know.
Also, if you ever need anyone else to talk to (at any time), Samaritans are always available. Their number is 116 123 (UK).
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