Just wanted to have a moan :)

Yesterday, my niece asked me if I could look after her 9 month old daughter for her and I readily agreed because she is the sweetest baby and I really enjoy having her. I had her for and hour and a half, that's all, but today, I can't move! So tired and my legs and arms are throbbing. She was as good as gold to look after and no trouble at all. All this pain just from lifting her. Its unbelievable and the thing is that because the baby enjoyed herself so much with me, my niece wants me to have her again whilst she is in work and I would love to but I really don't think I can. The trouble is, I look pretty healthy and people don't believe me when I say how ill I actually feel and the pain I'm in. I really don't want to upset my niece by saying I can't have the baby but what do I do? Its so sad when you can't even babysit for a couple of hours because you feel so unwell. My pain seems to be getting worse and I have an appointment with rheumy next week but I feel that my life has been altered so much and I find it hard to adjust. I just wish I could do all the things I used to without feeling I've been hit by a double decker bus. There we are, just wanted to get it out of my system and tomorrows another day so maybe if the sun is shining I'll feel a little better . Oh dear, just remembered, can't sit in the sun so that's out :)

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  • Hi, i really feël for you, sometimes I feël useless, feël depressed, but as soon I see my Dr. And I get the meds I need, I feël much better and then I feël positive again. Somettimes when I do not feël Good and I Must do something and I say That I am not up to it, they just can not understand it because I dont look sick,I think it is important for the people nearest to you Must understand this kind of sickness, I tell Them to please look it up on the internet. You Must excuse my English and my spelling I actually Afrikaans. Thinking of you and you Must be strong. Xxxx

  • Hi hun, don't say anything to her just show her your blog. Just carrying the shopping on Friday to and from the car virtually did me in yesterday I had to rest all day and take extra meds to get to a lupus fundraiser last night. I'm only 49 but feel 89, I would say 79, but my mum's 76 and she's much more sprightly than me, lol. Sometimes it's easier to express yourself in writing too. Take good care and remember your health comes first. :-):-)

  • One of the most frustrating things with lupus is that you never look as bad as you feel. I'm forever being told by friends that I look well, it seems so churlish to correct them. Does your niece know you have Lupus? Can you sit down with her and talk about your illness, or show her some literature? I always explain the fatigue and pain as like having "the worst flu ever and you never know when it's going to strike, hour by hour day by day" people seem to be able to grasp that better - even though we all know that such a description only scratches the surface. I think you have to be honest with your niece. Good luck.

  • Hi lillyanne, your story is so familiar, I remember having to do the same with my sister when my niece was born. My heart would explode with joy when I saw here there I was weak feeble depressed as f*ck and this little bundle of joy appeared, she was weaker than me, she would look at me and stare she would seem fascinated at every new thing and sound she came across it was the first thing that had made me smile in a long time. But I cold not look after her and I explained that for her safety and the unpredictability of my illness I was not a safe person for her to be left with. You need to plant a seed of doubt in your niece head about the safety of her child and she will understand better.

    You have to remember that thinks do get easier with children they grow up and become more independent and they become easier to look after so you just have to find a balance with what you can do with her now

    Some of the strategy I came up with was to babysit with my mum so I could enjoy but not have to take the strain so you can still have the joy of watching her grow and develop.

    You could also look at what you need to do to look after her, could you get a playpen so you don't have to worry about watching too much and picking up so much try and work out what you did to cause the pain and see if there is a better way of doing it that will make it easier. You don't have to be wonder auntie if you love them they will know :-)

  • I understand what you are talking a bout.People expect you to do things for them even thou you don't feel well. I used to look after my mum as her carer, it was hard i got no help except for some carers who couldn't wait to leave. when i said i was tired i got comments like there's nothing wrong with you. you don't look sick to me.why are you complaining. even when i was lying in a hospital bed it was, what's wrong with you now. just because lupus is not physical doesn't mean we are not suffering. your niece is wrong to ask you to look after her child. what happens if you collapse at home whilst looking after her child. how would you be able to call for help? obviously she thinks there is nothing wrong with you. It's hard being dumped on ,you feel alone and angry. obviously she has targeted you. you need to explain you are not as well as you look. Hope you get the right results for you.

  • Thanks everyone for your comments, its nice to talk to people that understand as I have found most people have never even heard of Lupus, let alone understands how it affects a person. My niece does know I have lupus but I don't think she understands how ill it makes me. I think the other problem is that I have always been so fit and would do anything to help anyone if I could. I used to work a full time job and look after my Mum up until her death three years ago, that's when the lupus really got a hold on me, even though I had been ill for quite a long time before that, I struggled through (but I had no option tbh). I have also lost a lot of weight(2anda half stone) and sometimes I look at myself and don't recognise me, but because I've lost weight, people say to me, wow, what have you been doing to lose so much weight, tell me your secret and when I tell them that I'm ill they say, well you look good for it!! Its so bl**dy frustrating. xx

  • Hi Lillyanne, I, like many others on here can completely relate to that. It's the feeling of wanting to do something with the knowledge of how it will impact on our body. I think the advice above is right and you can explain to your niece that you would like to do more but physically it is too hard. As the child gets older you can watch a dvd together and have shared laughs that way with popcorn or do activities that are less stressful for you but will be enjoyable to a child such as swimming, baking fairy cakes (even from a packet mix....cheating is ok;). I am like you and so want to do more but I am learning to give when I can but keep some energies back for us....it's the only way to cope with this. xx

  • hi have had lupus over ten years .I know all to well how you feel about looking after your neice .Ihave three young nieces and I love them all to bits .all you can do is take each day at a time im sure your neice will understand if you tell her how you feel lupus is a crual and nasty illness .Ihope you feel better soon CHIN UP

  • My daughter marie passed 2yrs ago. She suffered so much for lupus. i have so many adopted daughters and she loved to look after them. She looked after them even in her pain. She suffered for seven years. She died not because she had lupus but for the negligence of a doctor in the hospital. I miss her so much.

  • Oh Adozoa I am so sorry to hear about the loss of your daughter. And I know what you mean when you say that she loved to look after your children because I am the same. My job was working with disabled children and I miss it so much. I find I can't feel miserable when theres a little one around because they brighten up my day. My thoughts are with you and your familyxxxxx

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