Just feel so useless and generally frustrated as I just cant do the things I really want to do cos of chronic pain and fatigue. Nothing major just everyday things really and a few outdoor type jobs and taking kids on days out or just to park on bikes etc so normal things really!!
Yesterday I just spent maybe and hr with my partner and kids in garden pulling some weeds out, yes I did get on my knees stupid I know but what else can u do and today I am wrecked as I knew I would be!
I knew deep down when I got up yesterday that I probably shouldn't have done anything and should probably have gone back to bed if anything as I'd worked the day before and really struggled with tiredness and by 2.30pm could have gone go sleep. I just find it so hard and such a waste to be doing nothing all the time but then today I'm in tears and feel useless and cant even get up the stairs which is proving v difficult with 2 children one who uses a potty so I need to go up the stairs. I've had to wash in the sink as cant get in the over bath shower (am waiting for en suite with shower seat to be done) cos of this. I've had to take extra zomorph today too.
It's a lovely sunny day and again my kids suffer cos of me! Cos I'm so useless and feel like I ve been hit by a bus all over x
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Sara_A
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Big hug. I very much doubt your little ones think you are useless, even though you may beat yourself up. My mum is the jam as my adult sons now say. I remember how very exhausting it was to have two small children, I was well at the time and still had times when I felt a failure.
Just one small tip: I bought from Amazon some of the wipes they use for bed baths in hospital. My problem is psyching myself up to shower for fear of how cold I feel afterwards. The wipes do make you feel very clean and it’s much easier than using the sink x
Thanku I will look at those, I have on occasions had to sit down in the bath to shower as I am too fatigued to even stand long enough to shower and that's after spending 2 hrs working up to getting upstairs and into the blinking shower!!
I have recently got pip which included an unexpected back payment which has enabled me to get our ensuite re done and adapted for me with a pull down seat and a toilet at comfort height.
I just get so frustrated I'm just not somebody that can sit back and watch someone else do it I like to do things myself (properly ha!!) X
I use wipes as well LK because I can't shower..n my skin definitely won't let me use a flannel...ouch!!! Those wipes u get off amazon..can u let me know what u order please..my hubby gets them from a local pharmacy but they always seem to have a problem with stock!! Xx
Clinnell Bedbath Wipes. Each one big enough to clean you all over and don’t sting your “bits” either! I got a triple pack bundle, each pack has 8 moisturised wipes, and they cost me £5.98 on Amazon. I think you can use them on your face, but I don’t x
Ooh how useful to know Lupiknits! Hubby is due for a hip replacement operation in a few weeks so I’ll get a few packs of these so he can freshen up! Thanks for the tip! Xx
Hi there. I feel for you too as I never feel well these days and resent the constant flu-like illness that has always plagued me for as long as I recall and gets even worse for every good moment I have. Payback is a total curse.
Like Lupiknits I don’t have young ones anymore and no grandchildren yet as 3 adult sons only just about leaving uni now. I wasn’t a healthy person at your age and stage either but looking back I knew no better and my lovely husband of 30 years compensated for a lot of my failings as a parent (grumpy, always tired, always unwell is how I think of myself now).
But the times when he was working and I accomplished small but significant tasks and trips and outings are still etched on my mind as very special and also hopefully theirs too. I’m sure our children know, even from a tiny age - how much we can give and how much it takes. So the super mums we sometimes see rushing around with sporty, healthy smiles aren’t often viewed by their older children as any more loving or loved than we were by ours. Not in my experience anyway.
So just enjoy the still moments in the here and now if you can and if you pay later for stuff like gardening then this only makes the plants and surrounds even more special doesn’t it?
Hugs and happy Easter Sara-A - you’re a super mum (and gardener!) I’m quite certain.
I did read your post earlier but was kind of feeling how your feeling and didn’t know how to be positive about your situation.
It is extremely difficult with children around these invisible illnesses especially when they are so young.
Try not to beat yourself up too much, although that is virtually impossible. Do you have anyone you can talk too, really open upto so that you can talk through your own coping mechanisms? We store a lot of our own answers inside which only surface when we have the right person to talk too.
Do you have help with the children? Sometimes getting a break from them allows you to think things through more rationally whilst giving you the break you so rightly need.
My children are with my mum tonight, and I’ve sat here on my own with my 2 cats feeling very low and shitty towards myself being a mum . Then it dawns on me as it always does, my children get the best of me on my better days, I don’t choose my better days to go off out partying I put it all into them . And when I’m poorly I don’t think they feel like I’m letting them down they recognise I am restoring my energies.
We tend to put a lot of added stress on ourselves, and unfortunately feeling so rubbish just opens up those flood gates for negative thoughts.
Rest when you can, open up when you can and on your better days you do what you can and I bet you do more than you think you are doing . Xxx
Ah the frustration of having lupus...yes I know it well!!! As does everyone else on here!! I think it's particularly cruel that we're mostly women on this forum because we still push ourselves on a day to day basis in order to keep on top of things..looking after small children is a tough job..n of course all the other million n one things that us gals do in order to keep our family happy n comfortable!! My daughter's are grown now n I didn't have lupus as far as I know when they were smaller .n that was exhausting enough!! I really feel for u but please don't beat yourself up about it coz u will only make yourself worse.
Ok..lesson learnt then..your body's telling u that u did too much yesterday..n it's making u pay!! My wolf does exactly the same thing n I have come to accept that I'm never gonna be as I was before this dibilitating illness struck..sad but true n I have to just do the best I can when I can..which never is really very much..but I congratulate myself often n try n focus on what I have done rather than what I can't do..that's just too depressing!!
Your children love u for who u are..not what u can n can't do!!
Maybe u could get a little gardening stool to sit on when u want to do some weeding?
Gentle cyber hug heading your way 🤗🤗 💐 don't be too hard on yourself xx
Good morning. I feel so bad for you. I didn’t have my lupus pain until later in life. I know the exhaustion and effort that goes into raising a family. I used to do it all and loved it. Three years ago I still felt well enough to feel normal. Now, my normal is a shadow of the person I used to be. I take a short nap every day as it seems to relieve my back pain and get me through the rest of the day. I keep looking for a vitamin supplement that will magically give me energy again. I fell like I am in neutral gear coasting through each day. I try to make it to first gear to accomplish at least one task a day so that I can feel like I accomplished something. Once in a while I can make it to second gear and try not to overdo because than I know how exhausted I will be. I don’t feel up to joining my family and grandkids on outings because I just don’t have it in me and try to stay out of the sun. I have to accept that this is the new norm for me and there are days it depresses me. Than I read about you and my heart breaks for you and others raising a family. I can’t imagine. Sending gentle hugs and healing prayers. Take care of yourself first! 🤗
I have actually given in today and not done anything outside, I've sat in the chair and let my partner cut the grass and stuff as I know I cant do it. I've been so bad that yesterday I really struggled to even cut up and peel the fruit to make a fruit salad, my mum offered to take over and do it but I'm soo blinking frustrated by it and how my flipping hands just wont work properly, it's just driving me mad. I'm getting tingling in my hands all the time too and my hands are so stiff and sore that its waking me in the night so I've had to take an extra zomorph last couple of days to help with the pain.
I know I should up my steroids but I just hate doing that and I haven't long come back down off the last increase! I've increased my mycophenolate dose and if my neutrophils drop off the scale again that's it for that drug and onto methatrexate weekly injections!
I understand where you are coming from....you can still do these things only a little at a time, If I go out to the garden to do a tidy up, as soon as I feel an ache , I stop and sit a while, have a coffee, then if I feel up to it I do a little bit more, Its not the end of the world if things have to wait till another day. I'm being a bit tough on you, you may think, what I'm trying to say is.....what we have isn't going to go away, and I read you have young children, Its a life change now that will see you through each day with your children and your illness, I'm now 65...(with no young children to look after) thankfully my family have got used to my new ways, my refusals to go out for the day/ for dinner....you can only do what your body and mood will allow, please think about this, I do hope my heavy hand approach helps you....take care and look after yourself xx
I have been unwell since aged 21yrs have just turned 40! I have a son 6 yrs and daughter 3yrs I take 30 tablets a day including 6 zomorph slow release morphine tablets a day for the pain which is mainly in my hands, when my daughter was born I couldn't barely even pick her up my hands were so painful I had to kind of pull her babygro across the cot and pick her up with my forearms.
It's more frustrating than anything, I've just had a little 2 minute go a scraping some weeds with a hoe on the drive and my hands were buzzing and tingling like mad so had to stop so that's it no more!
Hello Sara A....hope you are having a better day today, like you I take a cocktail if drugs everyday, including Morph and Diazpan with slow release morph on standby when required however rather than take any more Morph, I take CBD drops which I find helps with pain.....
I'm been looking at the garden this morning, and boy does it need some work, so I'll take a couple drops of oil before I start with it, but will still only do about half hour....you can also get a cbd cream to rub on your hands which might help you....
Feel so sorry for you having children to look after as well....
My legs are big problem at the moment as well as the usual pain I have, finding difficulty walking, its like having weights tied round my legs….I see my consultant next week, fingers crossed he will have something to help me...….
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Feel so alone. 
