Sister has ME - pretty much housebound. How can I help her to stay sane?

[PMTIsMe]

She used to be a really active person, but now can't cope with being out/doing much at all. She doesn't know what to do with herself being stuck in all the time and is desperately bored and fed up...how can I help her? Does anyone have experience of how to manage your time when you are at home incapacitated 24 hours a day? I'm all too aware that if she gets too stir crazy she will end up over doing it and knock herself back.

If she is housebound I am guessing she is feeling really ill for most of the time and is often in bed.
Things that my friends did for me when I was like that, which I loved were:
-treating me like me, still having a normal chat and not holding back because I was now sick.
-making these visits short. If I said I could manage half an hour then the best visitors were those who left bang on half an hour and promised to (and did) come back soon. A little and often worked for me.

• Practical help is a godsend. Taking round good wholesome home-cooked meals that all she has to do is dish up is so helpful when cooking for yourself is a monumental effort. That way she can use energy on more fun things.
• Audiobooks were fantastic as I found them low energy. A friend signed me up to Audible (and paid!) and you get one free book per month which kept me going.

-can she cope with box sets? I could only cope with a bit of telly at short intervals but gentle stuff like Downton I could cope with better than anything more action packed. -can she sit in the garden? A friend got me a sunlounger which we padded out with cushions and I spent a huge amount of time outside, under a blanket if necessary. I much preferred that to the sofa. -Another friend got me a bird feeder which I could watch from my sunlounger. When you are very ill, little things like bird watching can give you a lot of pleasure. -My sister bought me a magazine subscription of trashy mags (I was too ill to read a book). Having that weekly hit of celeb trash at least raised a smile. -Things that helped me recover were meditation (she can do this even when very sick) which is amazing, Beat Fatigue with Yoga (or something like that) by Fiona Agombar which has some very easy bits in for very sick people. -My Mum used to take me on little drives. We'd just sit by the river but god it was good to have a break from the house. take cushions, rugs, whatever she needs. Again, keep a trip short so that she enjoys it and doesn't pay the price for it. -Most importantly (and I'm sure you do this anyway but maybe make sure you are) Listen to her, Believe her (so many people have this scepticism of ME and its so damaging) and try not to tell her what to do. Give her gentle cuddles, massages (if she can bear it), little thoughtful gifts (bubble bath if she can manage a bath). Encourage her with any little achievement she's managed. It will probably seem like nothing to her, but the elation of pegging out your first wash or walking to the end of the garden is enormous. It much nicer when someone else tells you how great that is too rather than looking embarrassed. -If she wants to try a treatment or recovery programme, try to be supportive, unless its totally bonkers! -Keep her home as nice and pleasant as possible. fresh flowers etc.

Good luck, its a shit illness, but kind sisters and friends do make a huge difference.

It will probably seem like nothing to you not her!
You sound like a great sister for asking on here how to help her.

I agree with Mickey, and how important it is too accept the illness(rather than dismiss it,) or try to push too hard as busy people are accustomed to doing. It is very frustrating being so unwell, and struggling to do the most basic things, and to understand that your body seems to have forgotten how to get better! When I was first ill I could do very little and was too easily tired to sit up or read or watch Tv. Radio plays and magasine programes and podcasts were useful although sometimes too noisy. Like Micky I enjoyed laying on a hammock in the garden for short periods. As I got a little less ill I got a tablet (iPad) and that opened up a range of things all possible from a semirecumberant position. I still use it lots! I used to climb and walk in mountains, before i was ill. It was a real joy to get up into mountains again, being driven to a col and walking down a little way then laying in the grass to be picked up later. It's a shame to waste precious energy on the basics of life such as chores, so cooking, cleaning or taking energetic children out may be helpful for your sister.

Can she type? She could start a blog, she might get a following.

Audio books are great.

Send her silly videos,.articles etc.., something to make her laugh everyday.

Take her out for car drives past beautiful scenery.

Organise short, small gatherings of close friends/family at her place, everyone bring a dish and clear up afterwards so she can have some social interaction if she feels up to it.

When I was recovering from glandular fever I used to love my friends just sitting on my bed telling me what they had been up to and all the gossip. I lived vicariously through my friends.

I think it is lovely that you are thinking of her.

Such fab replies, thank you so much I just can't imagine being stuck at home all day every day so it's so useful to get advice from people who have been through it. I do hope all of you are well on the way to recovery yourselves. Thank you again

I am bed bound right now due to illness. iPad has been my absolute saviour. Does your DS know about mumsnet? Even if she's not a mum, it's provided me with hours of entertainment (more than usual!) and has been a sort of company for me.

Boxsets, good books (reading Marion Keyes latest at the moment, I recommend), plus doing things like online shopping for upcoming birthdays, Christmas pressies (yes really) basically just using this time stuck laid up productively has made me feel better and not quite so depressed.

Also agree that food brought over (lasagne, chilli, my mum brought a cooked chicken and a bag of Caesar salad which was lovely) is much appreciated.

I know this sounds obvious but almost no-one does it, but ask her what helps the most. If her friends are being a bit useless (lots of people don't know what to say or do, which is perfectly understandable, but upsetting for the person) then try to get them a bit organised.

Also, maybe ask her what its like. You'll know whether she wants to talk or not.

I just wanted to send empathy and . I was in this situation a long time ago (before the internet as it is today). I spent about 2 years in bed then a very long slow improvement, wheelchair for years. I recovered, relapsed a few years later and recovered again. No sign of ME for a long time now.

Everyone's suggestions sound good. I'd maybe add contacting your local carer's centre and making sure you get the support you need to be in it for the long haul xx Is

When I was housebound I was desperate to hear about recoveries (still am!) And different ways to improve.
Your sister may be aware of them already but there is Optimum Health Clinic - a specialist clinic based in london but do phone consultations, Gupta Amygdala Retraining, Lightning Process as well as reflexology, herbalism and the usual alternatives.

I have CFS and it is awful. I was weeping when I read the first reply post as it is all so spot on and I feel a bit like I don't have someone who does that for me (although I sort of do, really). You are so kind to think of helping her like this.

I'm reading up on the Gupta technique now...sounds interesting.

CBT is a useful technique for CFS, and her doctor should refer her if possible.

Also, I have found a couple of blogs useful...Living with Chronic Fatigue and The Psychology of Chronic Illness.

I also find it really unhelpful when people try to sound sympathetic by saying how tired they are too, and how they'd love to spend the day in bed. I would so have been saying that sort of 'nice' thing if I hadn't got direct experience of having to spend the day in bed even when you don't want to. Not. The. Same.

Finally, proper relaxation is important...YouTube has free relaxation hypnosis videos and things like foot massages can be wonderful.

You are a great sister.

I agree with all above. Having someone be there for me would have been amazing. My own parents just avoided me.

I just want to echo what a fantastic sister you are, your post is so full of love and kindness that it really made me smile So many people dismiss ME as a figment of someone's imagination, laziness, mental illness... in reality it is one of the hardest and most life changing things to happen, and good support means the world to sufferers.

I've had ME for 4 years now, I was very ill for a while and then very well for 2 years. Now I've had a relapse and I'm bedbound again. It is a hard life to come to terms with so just being there for your sister will make a huge difference.

The advice already given is brilliant (in fact a few bits of it I'm going to steal for myself ) but I just wanted to add that there are a lot of really good charities and support groups that your sister can join if she wants to. If she is able to get online then there are plenty of groups on facebook full of great advice, and many websites like foggy friends and ayme (if she is under 26, you don't say how old in your post). Many areas also have local support groups; mine send out newsletters and magazines, have a lending library and arrange meet ups when people are well enough. It can be brilliant to have other people in the same boat to talk to, as whilst non-ME sufferers can sympathise and help it's just impossible for them to truly understand what it is like to feel so poorly and exhausted. Knowing you aren't the only one going through it can be very comforting.

I hope that your sister sees improvements soon. Yes this is a long term illness and she probably feels at the moment that she'll be housebound forever, but people do recover and sometimes things pick up quicker than expected. I am currently repeating this to myself daily!
Love to you both, and thank you for being so caring; it will honestly help her more than you probably realise xx