Lupus has made my life different to how I’d planned it to be......

[Sara_A]

I feel really bad saying this as I know that I am really lucky to have the things that I have but I somehow feel as though something is missing.

All my life I’ve wanted to help others and foster or adopt. It’s literally all I’ve ever wanted to do is give a child or children a home and love that they deserve.

I’ve been lucky enough to have my 2 healthy gorgeous children and I know that I shouldn’t be feeling like this but I feel that I have failed.

I feel massively guilty that because of my health problems that this lupus causes it’s prevented me doing what I believe I was meant to do.

I trained as a nanny, nursery nurse then went in to do my children’s nursing which I loved. Now due to my health I only work 2 days as a nurse in a gp surgery which I do love as it’s with vulnerable people and families but I literally feel everyday that a piece of me is missing and that I’ve failed and it’s really getting me down. Like I’m grieving for the life I wanted and I feel bad that I have/had so much to offer children who didn’t have that and it makes me so sad.

I struggle with fatigue and pain and my daily life isn’t how I’d like it as I’m tired a lot.

I know it sounds ridiculous and ungrateful but I just feel like it’s all been taken away from me and I feel cross with lupus!!

Drs always ask if I’m depressed but I say no but I think deep down this is the cause of a lot of my sadness and the fact that I can’t do the things I want to do like stay up past 7pm to even do housework or ironing etc!!!!

I know I shouldn’t moan but I feel like the life I planned has been ripped away from me x

[Hidden]

Sarah we are often told it takes time to grieve for the dreams that autoimmunity has robbed us of. I get this theory in principle but in practice it’s never been my way. So, although occasionally I do unexpectedly slump into a state of despair or inertia about the things I feel that Sjögren’s and Hypothyroidism and possibly other stuff have taken away, I’m of sufficiently sanguine disposition to believe I’ll get back on track with my dreams one day. So I scrape my way out of anger and despair and brush myself down after a brief wallow in the pit.

But I think you are saying that this is different - so can you explain a little more about why you feel that, despite having 2 children of your own and working with vulnerable people 2 days a week, you consider yourself to have failed?

I know only too well that fatigue limits us terribly so I think perhaps you might be saying that you’d like to be well enough to work full time? Or is it the adopting and fostering side of your ambitions that you deeply regret not being able to pursue perhaps?

To me what you have achieved despite Lupus seems great- but you feel what you feel so I’m sorry if you are very sad to feel unfulfilled because of the constraints this disease has placed on you.

I don’t know how old you are but I believe that hormonal changes can alter the course of Lupus for the better for some. So perhaps it would help if you could look forward to exciting challenges rather than regretting your life as it is in the present? Or would that simply set up more expectations you feel Lupus might dash perhaps?

All I can say is that, if I knew or even allowed myself to believe that I could never make a difference with my artworks, then I wouldn’t know how to carry on. But I genuinely believe, despite having a disease which tends to degenerate with age, and despite having genes that suggest longevity is very unlikely - I will live to see my young adult children continue to flourish and grow older and see my artwork on display in some of the finest places I could wish for them. Call me an unrealistic fool but I feel if I want these things enough - then I’ll surely get them? This is how I stay relatively optimistic despite the crap that my poor health keeps throwing at me.

On a practical level perhaps you could find someone who would help you with learning how to pace in a way that frees up some more energy? I saw a hospital OT today and he is helping me with this pacing malarkey and had loads of ideas I hadn’t even considered before. Anyway these are just some thoughts to try and console you a little. X

[Sara_A in reply to Hidden]

Yes it’s the fostering and adopting that’s causing me the upset and feeling of failure. I always wanted to have a busy house and lots of children. I wanted to esp give homes and love to children that don’t have it and knew that I cold free so much to these children. I feel sad that the fatigue has stopped me from being able to do this and that’s all I ever wanted to do.

I just think of all those children I could have helped and now I sit here too tired to do it and feel so sad.

[Hidden in reply to Sara_A]

I don’t think for one minute that you should try to fight the sadness Sara. It is important to go through this process of mourning.

But I do think, when you emerge on the other side, as you hopefully will quite soon - you could start to look for ways to overcome at least some of your fatigue.

I’m a great believer that, when rubbish happens to us then we ultimately have to find a purpose for it. So I really hope you’ll find your way through this sadness and beyond, in order to fulfil your ambitions. It may not be in the way you always anticipated - but I think there might be exciting alternatives that could allow you to channel your limited energies better than you are presently.

Maybe you could work with the fostering and adoption agency on this?

[maggielee]

Twitchy is very articulate & I have been slowly coming to terms to the many changes in my life and limitations that one has to face with autoimmune, especially the difficulty of others understanding how we are feeling.

I been working on the little things that make life good for me & had the family join in with, to talk about what they are grateful for - past, present & future ☺ it was quite interesting to hear their responses and for me to verbalize mine. With children it is great practice for them to find joy in our day to day lives & less focus on the things we don't achieve. You don't know what tomorrow will bring..maybe there are still opportunities for you in this area..

I know a nurse friend who works in a respite/foster group home for youngsters in the area. Your compassion may be better served with working with young people, even if it's not full time, there are many ways to help them, paid & unpaid.

There is certainly a grieving process, so wishing you well & glad you care so much, thanks for sharing. ML

[whisperit]

Hey Sarah

I worked with foster and adopted children for nearly 20 years before getting this horrible condition. It was the most rewarding work ever - but also the most demanding and exhausting. Having to give that up is even more bitter a pill than a handful of hydroxycloroquine tablets. I can't offer any real compensation, but maybe some thoughts - 1. You are still helping children and families in the work you do - and by being a good role model (for example, showing that some adults are kind and consistent and wise) 2. Like Twitchy and maggielee suggest, it might be possible to do some other work to support fostering and adoption agencies eg on "fun" days, by fundraising or helping with recruiting foster carers/adopters. 3. I wonder if you might be interested in one of the charitable schemes that involves supporting vulnerable children from a distance eg Action Aid child sponsorship. Although some of these schemes are a bit iffy, others are genuinely helpful to the children and communities involved. A bit of online research could turn up an initiative that you could really commit to?

x

[Iranianman1]

Dear SARA

I agree that being with lupus deprives us from many things we wish to do, but we should be realistic: we are not the culprit, are we? I remember once one Iranian physician and surgeon who most of his life he had spent abroad said"in the past, when I heard or read news about something bad that happened to anybody in any part of the world, I got extremely sorry. But after some time, I told myself that though those events were really sorrowful, but, after all, I was not the culprit. Even if I wanted to help those in a remote point on the globe, I couldn't. So I decided not to bother myself about what I could not do at all and, instead, I decided to help those around me who need it, and, of course, in the scope of my abilities and powers."

so we should not have unreal expectations from ourselves. I we can act according to our duty, in the limits of our abilities, it would suffice.

some useful tips:

1. Remember that you can help others more if you yourself feel better. So keep away from pessimism and stressful thinking. Think positive and be satisfied with what you can do, not what you want to do.

2. In debilitating diseases like lupus, sometimes our condition forces us and others to believe that we are depressed while in the reality, in many occasions, it is not the case. The therapist should examine, case by case, whether the condition is somatic or psychic. This needs extreme attention on his/her part, which is missing, in many occasions. There are many cases in which the docs regard a somatic a psychic and the other way round. So be careful in labeling yourself as depressed or not.

3. Whenever you feel exhausted and not having enough energy, just stop working for some time and get refreshed. Then you can resume your work with more energy.

wish you a healthy life

[Cann]

I think most of us if not all of us who suffer this way are caring people who have always done their best to help those less fortunate.

I was a special needs teacher until I became seriously ill following surgery, complications and devastating drugs which ended my career and I grieved for a long time, but what helped me was to pray and ask for help concerning what my work was because I thought I was doing it.

It was a terribly stressful job and often lacking rewards due to issues beyond my control.

I have since trained in natural healing and I learned so much and I am still able to help others without the physical involvement that can be so draining. I also write letters to those in higher places at various destinations regarding issues close to my heart like animal welfare, children, the elderly, the planet, etc. I was treated by Bristol NHS homeopathy hospital doctors who were brilliant with me for palliative care as it was expected I would not live after the conventional damage and I fought to keep it open, but alas, it sadly closed and yet helped so many.

I am still learning to pace myself and above all take care of myself because if we don't take care of ourselves how can we possibly help others.

Love yourself and treat yourself and keep positive that you can improve or learn to manage this difficult problem especially the fatigue. I learnt about my body in the healing course and how it works.

I have learnt to manage it by doing the things that we should all do, i.e. nourish ourselves properly by sourcing the best food available; exercise when we can; avoid as much pollution as possible; walking by the sea and near trees/woodland; sleep peacefully by addressing issues of noise, light disturbance, discomfort, etc.; learning relaxation and breathing techniques such as meditation and being at peace with myself and world - all not easy, but essential in todays difficult world and most of all thank the universal energies for what I do have because no matter how bad I may feel, there is always someone else worse off.

Don't be ashamed to cry and grieve - it is necessary, laugh when you can because it produces good endorphins even if you feel there is little to smile about - just smile in the mirror as the body doesn't distinguish why you are smiling - it helps.

Writing this reminds me of what I did and may be need to do again. They are all things good for helping to manage it all. You can do it and don't feel guilty, but find ways of occupying your time that do help someone else without draining you. May be you just weren't meant to foster and adopt children, but somewhere out there is something you were meant to do - it is just that you have to search for it and find it. Don't give up and good luck.