I'm really struggling atm with fatigue and then other days hip pain, you know the varying day to day lupus symptoms one day this one day that! But atm I'm having real trouble getting the energy to go up the stairs at home I'm 40yrs old with 2 young children aged 3y and 7 y so have to go up the stairs ( my 3y old does have to use the potty in the day as I just cannot take her up and down I know it sounds bad but I just cant do it, she can use the toilet perfectly so it's not as if I'm holding her back).
Anyway I was thinking of a stairlift, seems bit drastic as I don't need it everyday but about 3 days just this wk I've been bad. I have a couple of aids already in the house I have a shower seat and bath rail.
Most days I have to make sure I have brought down everything I need for the day and only go up maybe once a day to the toilet. So I def dont get up to clean and do many jobs up there which stresses me out too.
Does anyone have any experience of UK costs of a straight staircase stairlift just rough ideas, my mum has said she will help pay or will pay for it.
I'm today again on sofa with my poor kids stuck in again because of me, I feel like a useless parent and that they deserve better than this than me x
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It is possible to get secondhand reconditioned ones as well as new. Have you asked for an Occupational Therapy referral to get advice? I assume this is your own home?
but it is well worth contacting the NHS and the local council for information about grants. As they point out, it isn't just the capital cost, there is maintenenace to consider too.
That's great thanku for that, I used to see the rheum OT for my hand and wrist splints so I can get referred back to see her again. I just think that because I don't need it all the time they may say no.
We were going to get an extension downstairs to include a downstairs toilet for me but we thought about looking into a stairlift to see if that was a better or cheaper option as it would also mean I could go upstairs and do the jobs that need doing there too as nothing really gets done up there as I'm rarely able to get up there plus do them it's one or the other!
I'm so fed up of this existence at the moment, and pretty sure tomorrow will be me up for 2 hrs cry and end up back in bed like last wk again so my poor kids again get to do nothing exciting because of me x
As Roarah says, stairs are a very important source of exercise - I back everything she says.
Personally if it were me I'd choose the downstairs toilet option - not only for your benefit now but because in the long run it is an investment, adding value to your home and something that is so useful when you have children - no more dirty footmarks up the stairs to clean up! Once you don't HAVE to do stairs to go to the loo on bad days it makes other things easier. Good handrails are also a great help even with fatigue. I had to crawl upstairs too at one time - the solid handrail was a boon.
Don't beat yourself up because the kids don't get to do "exciting" things - too many young parents do that nowadays, thinking their children have missed out, There are other things to life, believe me!
Please see you rheumotologist for some other options first. more and more studies are proving that stair climbing into older age is very important. Study after study show that the more we climb stairs the longer our hearts beat, the healthier our joints and muscles become and the longer our minds stay healthy.
Please know that I am not unsympathetic to your pain and struggles for I still have a young family and live in a three story home and in addition to lupus I have partial right leg paralysis from a stroke last year. I take my time on the stairs but I actually think the more I climb the stronger my muscles become thus improving much of my hip issues.
Changing to new meds, physical therapy, yoga, light weight lifting, biking, walking to strengthen the muscles in the areas surrounding your pain is far more effective in helping you heal than taking it easy is. Please speak to your doctor for other options first.
I'm not saying that I would use it all the time it's just the days that I have to crawl up the stairs or dont have the energy to actually get up and down them. It's not due to pain or that I cant climb them because of pain it's down to severe fatigue and exhaustion and yeah maybe occasionally hip pain but I generally try to just go up sideways with my back against the wall then.
It's the unbelievable fatigue and lack of energy that I'm struggling so badly with. I'm on immunosuppressants and steroids daily and zomorph daily plus a lot of others approx 30 tabs daily. See rheum on 27th dec again we are looking at where to go as had to stop hydroxychloroquine after 10yrs as damaged my eyes x
Your kids have a mom that is all they need or truly want! They want to be near you but they do not need you to entertain them, they just want your company. Play board games, cuddle together with books or even tv time. They watch while you can nap but your body near their's will provide you all with quality time.
As to your fatigue, please conscider checking your meds with the doctor to see if any alone or combined with others might be causing your symptoms rather than lupus itself.
I hope you enjoy your holidays with your kids remember they remember us being there not what activities we did or did not do.
I don’t know what the next service costs. Will try to find out.
They got it from Ac**n
My sister said that the cheapest ones are best avoided.
I am also considering a stairlift.i think it would be beneficial for you.you won’t get as exhausted,wouldn’t get exhausted carrying stuff up and down stairs.it nearly finishes me off physically.
I’m lucky in that I Was diagnosed when I was 66. My kids have left home,so that pressure is off.
Have you thought about your kids playing out?
Mine used to love the garden,used to wrap them up,I used to wrap myself some days and get the deck chair out. It tires them out if you have any outside toysIf it ever stops raining. That is. Take care
I was thinking around the 2k mark so thanku and that was the preferred company that I had looked at that u mention.
Yes I often have to wait for things to be taken up or down for me which is awkward as partner works and is out of house 8-6.30 Tues-sat .
Today I've had a particularly bad day and just cried non stop and the effort of getting up the stairs just cried once got to top couldn't help it. Just been in right state with myself today.
Yeah I get the kids outside as much as I can I open the garage with all the toys and get the big chalks out and let them lose on the drive while I sit at the front door or on a chair.
We have been on sofa today watching Christmas films and colouring but I just keep crying. But I guess that's another issue!
As to the crying, depression can make fatigue so much worse and fatigue can make depression worse so it is a hamster wheel we end up spinning on. Please mention this to your doctors. Denying our sadness for fear of a fibro or depression diagnosis is so harmful to our care.
We often have both depression and lupus simultaneously and it is supper hard to distinguish which ailment is causing our fatigue so both need to be addressed and treated to improve.
In multiple meta analysis studies on lupus fatigue the two must effective treatments for fatigue in lupus patients were exercise and Belimumab followed by CBT to address depression. If you are not on Belimumab yet it maybe worth exploring with your physian 's blessing.
I'm on mycophenolate but I will definitely discuss that with him when I see him this wk as need something adding, we were looking at methotrexate inj but will discuss this. I also have aps with really high antibody levels and triple positive.
Had better day fatigue wise today but joint pain not best but got myself out to walk the dog, it's a funny disease this lupus from one day to the next! After 20 yrs I should be used to it and able to deal with it by now x
It sounds like you are having a tough time of it at the moment.
I think the advice given by others is good but, there is another option worth thinking about. Stair lifts can be hired. The company will install the lift, maintain and repair it and take it away if it is no longer needed. The monthly cost is reasonable and alot of the worry is taken away because repairs and maintenance are included.
Just search online there are many companies which offer this service.
Yes pretty bad at the minute it's all just getting on top of me I think , when u have a bad day it's just the worst and I've been having quite a few recently and it's hard work when having young children that need you.
Thanks for the info gonna look into all the options.
Had a better day fatigue wise today, it's a funny old disease!
It is very difficult at times and my 3yr old is very hard work at the moment she still comes into our bed during the night so my sleep is disturbed. And the days are long with dad not home til 6.30pm.
Oh yes and when u say u are tired and people say oh yes me too u are like no I'm soooo tired to the point I could just lay on the pavement and sleep, it's just not the same it's a different level.of tiredness it's pure fatigue and exhaustion. I have a blue badge and I don't like people seeing me get out the car and walk off cos most times I use it is for the 2 days I work so I can stay working so I can park near work, I think people will think what does she need that for theres nothing wrong with her! But they dont see me like I was yesterday or the 210 tablets I take a week (and I'm still not 100%!!)
A friend of mine who is also a nurse like me is going thru a diagnosis herself at the moment so it's nice (for me not her)that I can speak to her and moan about how rubbish I feel etc.
I dont know about a support group i will have to try find out.
Thanku, I do feel bit better today, it's so hard when u have such a bad day u lose all perspective.
You seem to be having a really bad time at the minute. This is supposed to be a happy time of year but all too often it isn't, particularly when you're just too tired to enjoy it. I remember how guilty I felt when my young daughter was full of energy - particularly at this time of year - and all I wanted to do was sleep. It's so, so difficult and I remember it well. Do you have family, or perhaps a kind neighbour who also has children, who might take them off your hands for a few hours? But then you must sleep - and not use the time to catch up on chores (I've been there!!). I wonder if you could consider moving to a bungalow as it might be the best option in the long run? Of course, I don't know your financial position and this might not be possible, but spending money on stairlifts, downstairs toilets isn't cheap either. I hope this helps, take care of you.
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Ok, just having a bad day 
MMF side effects - getting me down so much thinking about stopping them
Hi
Is there a support group in London does anyone know?
Anyone having asthma issues get much worse with SLE?
