How do other mothers cope with having SLE? - LUPUS UK


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How do other mothers cope with having SLE?

purple-lou profile image

I have only recently been diagnosed and I am really struggling to cope. I have two children who are unbelievably supportive and a very understanding partner. I find it impossible to get up for school and worry so much. What if I'm too bad to take them to school? What if I can't collect them? My partner works full time and I have no other support network. All my family seem to conveniently forget that I am so ill. I go straight back to bed after the school run to try to regain some energy levels. I feel so down at the moment. I feel like I'm a burden. Is this thinking process normal? I wish I could see a future for myself. At the moment all I see is pain, fatigue and frustration.

11 Replies

Hi Purple-lou,

Are you on any medication as yet as for me the placquenil worked for the fatigue/aches. Are you able to talk to the children's teacher/school and explain what lupus is (take in information from Lupus UK). Are there any mums from the school that you could explain what is happening to you and if you are not there they will be there as a back up. I think once you explain to people they are often kinder than you think. It's just the opening up and being honest process that is the hardest. I find this difficult too but I have started to be more open too. All your feelings are completely normal in the circumstances and more often than not I find it's about not wanting to let people down that I worry about too. I'm so glad you have support from your children and husband. Please go back to your GP if you are struggling with no meds too. Regards M.

purple-lou profile image
purple-lou in reply to mstr

I have been taking placquenil for about two weeks and had a steroid injection 3 weeks ago. The injection helped alot but it seems to be wearing off now. I think the main problem is that I'm struggling to accept my illness. I don't want to have it! I have always been very independent and now I have to rely on other people. My children go to a school that is out of our area so I don't have the option of a friend or neighbour taking them. I'm sure it will all work out...... Hopefully! Thanks your advice. This website is a life saver.

mstr profile image
mstr in reply to purple-lou

Hi Purple-lou, The placquenil took about 6 weeks to really start kicking in for me and after about 3 months I could tell it made a big difference, particularly with the fatigue. Like you the steroid injections were short lived for me too and so I have tried not to go for more of these (it is a personal choice though). I understand your struggle for acceptance as I am only just getting there now after about 15 months and I think it is natural to grieve for plans that you had and had to let go. I truly believe though that you gain in strength through time and I hope that happens to you soon. You start to accept and adapt a bit more. I really hope meds really kick in soon as it must be so hard to have an illness like this and children......hat off to you for achieving what you already are. It's ok to move the goalposts and not achieve as much as you would do if you were well. Wishing you lots of strength Marionx

Being diagnosed with any serious illness takes at least a couple of years to come to terms with and learn to manage Lou so don't be too hard on yourself ATM. Things will become easier given time and you're also likely to have periods when you feel reasonably well. It's not all doom and gloom forever - I promise - although in the beginning it's easy to think that and most of us with SLE did. Re. the morning school run, you could have been writing about me 20 years ago. I had no family around to help and found it extremely difficult. The school may be able to put you in touch with another mother (or two) close by who could help you out during flares, when you feel really dire with, perhaps, you picking up their children and bringing them home in the afternoons. In the meantime, nothing wrong with going back to bed. Resting when you need to plays a large part in the successful management of SLE! x

Hi Purple-Lou

I was diagnosed sometime ago but think I was in denial and the last few weeks I have had to accept this and I am really struggling.

I have had a significant flare since the beginning of the year I have had steroid injections and am on placquenil and Methotrexate.

I have an autistic son who goes away to residential school during the week and a young daughter I am finding it so difficult to deal with and have been thinking that my son is getting more and more difficult to deal with but on reflection I do believe it is that my patience is not as good and this in turn is affecting my son! I am so tired and just feel that I am not in control of my symptoms and feel totally fed up.

I have been signed off of my work for a while and am seeing a councillor later this week that I really hope helps as I just cant see a way out of feeling so useless and such a rubbish mum.

I find it hard to talk about how I really feel as I feel like a failure and I really hope that by joining this site it helps.

You are not alone purple-lou xx

Hi Purple-Lou

I too struggle with looking after the kids (I have twin boys who are now 13), I got will when they were just starting school 9 years ago. It was really hard at first, I always went back to bed after dropping them off, and once I was half and hour late picking them up because I'd fallen asleep in the afternoon and forgot to set my alarm! Luckily a friend who had a child in the same class stayed with them until I got there. As they got older I trained them bit by bit to walk there on their own (we live a mile from the school) and when they got to 9 they walked themselves to and from school which was such a relief. They have each other being twins so I always felt a bit more confident in letting them have their freedom than if it had been a singleton.

Since they got tall enough to reach the sink, they do the washing up and clearing up after the main meal. They have to keep their room clean and tidy too. I'm about to teach them to clean the bathroom (they don't know that yet!). I send them to the shop to buy bread and get them to help me with shopping. They also make their own packed lunches for school. It's sometimes tough on them to have to be carers in a sense, but I think it also teaches them good life skills -and empathy.

When they were younger, summer holidays were a real problem as I wasn't well enough to entertain them all the time. I was lucky, I live in a Surestart area and funding was available through the social worker to get them into a holiday club for a couple of weeks each summer. My mum would also help out once a week, and my husband would also take time off to take them out. Now they are old enough to entertain themselves.

I'm sorry you are feeling so overwhelmed with the diagnosis, it took me a few years to get my head around mine! But it's easier now. What was hard at first was asking people for help and not feeling guilty about it! Asking for support (you deserve it) is very important.. and it helps everyone else too if you are less stressed and therefore less unwell. Stress makes you ill so it's for everyone else's benefit too if they help you out. I hope you get the support you need. Be gentle on yourself, getting the diagnosis takes time to process, and you need time and love. xx

Thankyou so much to everyone for all of the support and advice. It is so helpful. I suppose we are all going to have times when we feel low. Thankyou. Xxx

Hi, I can completely relate to you. I have three kids and constantly feel that I have been letting them down. I have twins and one has just blamed his exam results on his home situation. I made the mistake of not asking for help for prides sake - people always say "how do you cope?" and on the outside I appear to but having just been admitted to hospital with depression/anxiety I have realised that I can't cope on my own and do need help. Hope things are okay for you and explain to kids. xx

Hi, you sound so much like me. I was diagnosed 5 months after my twins were born. They are now just about to turn 6 and it's been hard but I would not change anything. That is now I have had the time the get my head around it. If you go on a website called but you don't look sick . Com you might find it helpful follow the links to the SPOON THEORY and print it. I showed a copy to my family and my carer and they found insightful into living with the choices that we have to make on a daily basis.

Firstly if you don't mind me asking where about in the UK do you live as if you are near me and you want we could get in contact or maybe somebody else from the site might feel inclined to contact if close.

You should have a social worker for your son, if not you need one. You can either self refer or your doctor or school can. The same with you. It's amazing what they can help you with. I am on a scheme called direct payment where I employ a career (or personal assistant). The council say how many hours you can have and you choose how best for you to use them. So that could help with the school runs or shopping or cooking the evening meal, whatever you need. You have assistance so it's not down to you and it's helped me and my family in ways I can't describe. All that is sorted by social services.

I claimed DLA with help from the citizens advice to fill in the form and part of that is what pays for my care.

Your daughter has a double whammy of being a young carer so she should be referred to your local young carers group. Ours is run by Barnardos and they take the children out for the day and also for a couple of days away. They run activities all year either in a Center or going out and they can give counciling if needed etc. we also have a group in our area called Daffodils which is for disabled children and families. They run all kinds of activities and trips etc and they are on the weekend so that's something for both of your children. Again social services or your sons school can tell you about those clubs.

Due to your illness your daughter might be entitled to assisted travel (school run), not all councils do this but it's worth a try. It's similar to the taxi/bus service for disabled children but would transport your daughter as toys are disabled.

I felt like I was letting my family down the same as you but I realised that I did not choose to have this thing inside me and that I/we deal with it the best we can. Lastly your family love you and no matter how badly you feel you are coping etc that they would be a lot worse without you. Your family love you and you need to learn to love yourself and your list of ailments.

It's not easy but it will get easier when you get your head in a better place as you will find coping mechanisms and help that you need. It will happen but not overnight but the light at the end of the tunnel does get nearer.

Sleep when you can and smile and laugh at every opportunity as it does make you feel better.

Love to you and your family Helen

purple-lou profile image
purple-lou in reply to helentad

Thanks so much for that reply. It has inspired me to try to be positive. The spoon theory is amazing. It made me cry because it is a reflection of myself. I have shared it with people who I know will appreciate it. Some people are just too narrow minded and aren't worth bothering with. I hope you are ok at the moment. Lots of hugs. By the way, I live in Shropshire. Xx

helentad profile image
helentad in reply to purple-lou

Hi glad it helped. I live in Deeside, North Wales. Not far from Chester so if you are ever about give me a shout.

Best wishes Helen

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