Hey, I'm kinda new to this whole site. I basically joined because my mum has Lupus and has done for as long as i can remember.

[bethhunter1994]

I just wanted to ask some advice on how I can help out more? She does'nt like to admit when she's feeling a bit under the weather- she'd rather keep herself busy. But obviously I worry about her. Being her teenage daughter things aren't always great between us both but I love her and i want to help.

[Lulabelle]

Hi Beth!

You sound great! What a thoughtful and sensible young lady you are - you already sound like a credit to your mum!

I have Lupus and Sjogrens and other symptoms - won't bore you with the details. But the worst part of the whole process for people, including mum's with Lupus is the fatigue and the frustration of not being able to do the most simplest of things each day

My daughter has recently turned 11 yrs old - and as she is still quite young, but thinks she older lol!, my partner and I don't go into detail, but she knows when I have my off days, when I am tired and irritable. Because is is starting to get some concept of my condition, she has started to help with the little things that are a BIG thing for me like: tidying her bedroom and keeping it clean, polishing the living room and her play room, help carry the washing down from the stairs, doing the dishes - but still hasn't got to grips with the hoover yet.

When I am really down she will come and sit by me and give me a very big hug - always comforting or give me a little shoulder massage, which is great!

I attended the Lupus UK AGM Meeting yesterday in Warrington, Merseyside and they provided books and literature with regards to children/teenages of parents with Lupus or affected by Lupus.

My advice is to contact Lupus UK or Paul Howard from Lupus UK via email to see if he can post out for your perusal some literature on this.

Let me know who you got on and what you thought of the information, it may come in handy for me with my daughter at a later date.

Take care, Lulabelle x

[bethhunter1994 in reply to Lulabelle]

Thank you so much

I understand the frustration- I often find my mum feeling that way herself. Your daughter sounds lovely! It's great that she can react to your feelings and knows exactly what will help.

I will look into it! xxx

[loopy-lou]

Hi Beth

Aren't you lovely! I agree with Lulabelle-you sound such a credit and a wonderful daughter to your mum already to take the time to find out more. I too have lupus & fibromyalgia. My son is 17 and again has been wonderful to me. On the flip side of things it is very frustrating when you cannot always be the perfect mum on off days.

I find I appreciate little things being done. Even a cup of tea being made or as my son surprised me recently by washing up. Absolutely anything helps and I feel better when I am less tired. When I get tired and having a bad day that is when I become irritable. My son too comes and sits by me and tells me he loves me. It is things like this that helps me.

I am sure you are already doing all the right sort of things.

Good Luck & Hugs x

[bethhunter1994 in reply to loopy-lou]

Thank you for your you lovely comments x

Oh i'm sure there is not such a thing as a perfect mum, but there is such thing as a caring and loving mum which by the sounds of it- is you.

I guess hearing "I love you" from your son is a big pick-me-up It's lovely that a teenage boy isn't afraid to admit that to his mum. He's probably in the same position as me. Never forget that you are most likely the most important person in his life. He sounds like he will always be there

Hope you're well xxx (thanks again)

[Looby]

Hi Beth - not a lot I can add to these great comments above....except I wish more people were like you!

I am lucky in having a husband who treats me "normally" (and with a smile). He helps in practical ways without making me feel useless. As the others have said - it is the small acts of kindness which mean SO much - and I hope you can still chat with your Mum when you have your own problems and questions.

Having someone you care about with you, when going to hospital and GP appointments is good - sometimes I cannot remember everything the Doctors tell me, or forget to mention something significant - we "Lupies" don't like to sound like hypochondriacs, even though we are often treated as such!

On your Mum's "good" days - suggest doing something you know she will enjoy. Do you think she would join in on this Blog site?

[bethhunter1994 in reply to Looby]

You're very kind

I suppose the key to helping out is to treat a person with lupus like a normal person - it is not a disability - but to offer as much support when needed. Your husband has obviously got this nailed!

I do tell my mum alot of things. But then if something is bothering me that may worry her, i tell my sister. Stress causes her to smoke cigarettes more and i dislike that. Her hair falls out and it breaks my heart.

Yeah, I mean when my mum tells me that she is a bit ill i tell her to go to the doctors? and she wont! "I don't want to bother the doctors again". She feels like she is a pain i guess but I just want her better?

Well my driving test is coming up and i've been driving her into town etc with my 'L' plates on the car. I think she enjoys the company I certainly enjoy hers.

To be honest, she's not that experienced with computers but I have been printed her off little bits of advice and information she might use. I will be printing these replies off - to show her im wanting to help.

xxx

[janiceray]

What a credit you are.

Love & Sunshine

[bethhunter1994 in reply to janiceray]

Wow thank you

xxx

[amandalilley]

Hi. My daughter Sophie has been helping me since she was twelve. She would love to hear from you. She is 21 now. Drop by our web site and send a message, she replys to everyone and enjoy the Imag.

Best wishes

Mandy

[amandalilley]

Forgot to tell you the web site - Lupus Brian Fog !!!! LOL

Beat the butterfly .com

[bethhunter1994 in reply to amandalilley]

I will take a look! Thank you

xxx

[helentad]

HI, like everybody else says just doing this showa you care. May I suggest you show her this page and get her reaction like that. She will probably cry like I thikn most people do when they realise people are now just saying something but do actually ,ean what they say and they do actually want to help.

I have 5 year old twin sons and they are starting to be able to read my body, forinstance if I am standing at the kitchen cupboard and shift from foot to foot then my feet/ legs are hurting and you know what they would be right. The first time one of them told me and then took me to sit down and I asked why they said your feet told us mummy.

I know this sounds silly but I did it with my Nan, I watched her for a few weeks and also took a sly (yes I know not nice but I was doing it for thr eight reasons) look at her tablets inc pain. She did not like taking pain killers and if they all of a suddon started to disapear then I knew she was in pain and I watched her walk etc to see her movements, then I could read her better. Oh and any stress to me normally kick in to pain etc so maybe that could be a pre emptive thing, try taking your mum away from the stress. You could try depending on if her pain allows her. Go to your local beauty college and find out when they do massage. My local in N.Wales does full body massage for about £15 and its fantastic for getting rid of the aches (but not when your skin hurts) just a light massage not a Sweddish.

Hope that helps and good luck with helping your mum and have a beautiful life.

Helen

[bethhunter1994 in reply to helentad]

Yeah i will show her this page! Good idea

Your twins sound amazing! Very observant which often means they are very intelligent - particularly for five years old!!

It doesn't sound silly what you did with your nan at all. It sounds sensible. Instead of asking her outright how she felt, you read the signs before it started which means you were prepared.

The massage classes sound like a great idea! Thank you very much for your advice. It helped plenty

I wish you all the best Helen xxx