Bored bored bored bored bored

New to Carers Connect
1

Hi

I have been caring for my daughter for 18 months, she has a series of medical diagnosis racking up! I have always been super positive about dealing with the issues one by one. They were all under control by the summer and in theory, everything should be fine. BUT she has now contracted CFS/ME, she no longer goes to school and we have spent days … weeks … in the house. It’s going to take her months ++ to recover and the thought of being stuck in the house all of that time (she is not old enough to be left alone) is just awful.

I have a lovely group of friends who I see as much as possible evenings and weekends but they chatter on about their busy lives and holidays and their kids achievements la la la and it makes me sad - all I have to talk about is Dr’s, medical insurance, meetings at school/LA about absences, test results, how many seasons of whatever I have racked up on Netflix.

My husband has a super stressful job and can’t help out during week and grandparents are miles away … and very busy themselves. I feel like the most boring/bored person in the world. The most exciting thing I have to do today is the washing!

Just wondering if anyone has any advice on how you fill your days? How do you make small talk when you’re asked how things are and what you’ve been up to?
Thankyou
K

2

What is happening about her education? Has she had a Needs Assessment from Social Services, and you, a Carers Assessment? Have you claimed Attendance Allowance (I think this is still paid to under 16’s rather than PIP, but a disability benefit should be possible.
It is really important that you keep your own life going for some of the time. Friends won’t want to know about your problems I’m afraid, no one understands what it is like for me to have a son with severe learning difficulties, they moan about the trivia of their own children’s lives, I’d just love my son to be able to read and write!
How about a regular course on something, or the gym.
It’s vitally important that your daughter doesn’t get too dependent on you, and accepts others to help her rather than you.

3

How old is she?

How come she can’t manage outings in a wheelchair (well wrapped up, obviously). That would get you both out of the house. She must be stir-crazy too!

Do her schoolfriends visit her?

Have I misunderstood something about the severity of her disability, and that for some reason I don’t understand she can’t manage a wheelchair??

If she’s too young to be left on her own, then you must have regular outside carers to ‘take your place’. Can your own finances stretch to this, or would you need it supplied by Social Services etc.

As BB says, it’s essential your daughter does not become over-dependent on you, both practically and emotionally.

Is she in touch with any young CFS/ME patients? These days, there is bound to be an online forum somewhere…

4

Thank you for lovely replies. It’s nice to know you get the thing about friends!

I am currently in contact with LA for them to provide medical needs home schooling - she is a bright kid (age 11) - I have written letters and filled in so many forms etc etc… that I am bored (that comes up a lot doesn’t it) of dealing with nothing but authorities etc. I have found a brilliant service called IPSEA who provide free legal advice for education issues and they are helping me with that - so that’s all work in progress.

Dr’s have advised against being immobile/wheelchair as the less she does the more disabling the condition becomes. But she’s not up to much walking at the moment and she’s always always there! I am never alone! … Currently waiting on waiting list for NHS specialist clinic.

I think at the moment it’s just that everything revolves around small child and has done for years. My life is getting smaller and smaller.

I am going to look at DLA in the new year but heard it’s not always paid out for CFS/ME - and its another form!!! I guess maybe could use that for a Nanny a couple of times a week?? Might work maybe?

Thanks
K xx

5

"Dr’s have advised against being immobile/wheelchair as the less she does the more disabling the condition becomes. But she’s not up to much walking at the moment "

Well, I can understand that as a general principle, that’s certainly ‘sensible’ (though, I believe that there is a contrarian POV by many ME patients that actually exercise HARMS them - I’m sure you are au fait with that argument, though it is not ‘orthodox medicine’ at the moment. That said, I don’t know what that contrarian POV recommends for treatment, if they say ‘no exercise’??)

…but, there’s a huge difference between your daughter becoming ‘wheelchair bound’ - as in, can’t cope AT ALL without a wheelchair, and using one intermittently, from time to time, simply to get her out of the house and somewhere more interesting!

Why can’ the two of you get to shopping malls, and even if she’s in a wheelchair being whizzed around by you for an hour or so, so what?? Does her good and you good! Many National Trust properties, for example, are wheelie-friendly, and again, that would be somewhere to take her, and you. Theme parks, too, are wheelie-friendly as well - so are loads of places these days. It will take more organisation, but hey, you did this when she was a toddler in a push chair, so it CAN be done!

Yes, it would be ‘you and her’, but you would be out and about and getting external stimuation and having fun!

Modern wheelchairs are light and foldable into the boot of a car, to increase your range of access.

I just don’t see why that isn’t a possibility at all?? No one is suggesting she LIVE in the damn thing, just to get her out and about, and you too!!! Why not???

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PS - if she doesn’t like to be seen in a wheelchair (kids are SO self-conscious!) you could bandage up one foot in a huge white bandage and say she’s hurt her leg, hence the wheelie. :slight_smile: :slight_smile:

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IPSEA are great! Certainly helped me do battle with the LA, appealed all the way to the Secretary of State for Education to get funding for the education my own son needed, some years ago now.
A mobility scooter would mean you and your daughter could get out and about together. Definiitely get that DLA form completed asap. There’s only one way to start the process, fill in the form and send it off!! It doesn’t look at the name of the illness, but what your daughter needs help with in relation to daily living.

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HI and welcome,
Totally get the “everyone is getting on with their lives but me,” feeling. I have that too. My friends’ children are growing/grown up and independent, but S still needs my support all of the time we are together with no end in sight. I’m not in the desperate situation you are, he does go out to his college follow on service during the day, but evenings and weekends and holidays (like now) we are joined at the hip 24/7. He seeks a lot of reassurance and I too long for me time without him at my side. My friend’s and work colleagues go away, have evenings out etc but I’m limited to what I can do with S.


Jenny made a good point about her friends. Does she still see them? How about a few playdates? Inviting her friends over to see her and then hopefully the other mum’s will reciprocate the arrangement. Even if they just watch a DVD together on the sofa, nothing strenuous?


Good that IPSEA are involved, I used them many years ago and they were great. In the meantime I would look at homeschooling sites and groups in your area, and meet up with some of them. At least you will both get interaction with others etc

You definitely need to find away to get her out and about, or she will be adding agrophobia to her list of diagnoses. Even if she does use a wheelchair to get from the car to the door of the venue and has lots of sits down to rest once inside.

Melly1

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On the wheelie front - kids can find taking a chum out with a wheelie (under adult supervision!) great fun. A boy at my son’s primary school had a wheelie for his broken leg for a while, and the other kids loved whizzing him around. They queued up for ‘their turn to push’…

(And and ELECTRIC wheelie or even better a mobility scooter would be BLISS for them!)

10

I’m sorry to hear you are having a tough time atm.
That isolation and loneliness thatyou describe feels familiar to me from when I was a single Mum with 3 pre school children.
But your situation is obviously far different in terms of your daughters needs and that must be emotionally draining and upsetting.
I would agree with what previous posters have said about arranging something to get her out and about. If only to give you an hour to go and do something for yourself.
I hope things improve or at least become more manageable for you soon.

11

Thankyou for all of your tips. I’ll try and get some plans in place for new year. Might delegate the hideous 62 page DLA form to husband as his Christmas holiday project!

Definitely struggling with the isolation and feeling out synch with everyone at the moment. I think seeing lots of people at Christmas makes it worse … lots of small talk about how great everyone is doing and holiday plans for next year etc.

Spend so much time looking after everyone else and not feeling very looked after myself. Throwing my own Christmas pity party!

Smalll child is very well looked after by us and Drs and yes friends do FaceTime and text. Have sent her to a few friends houses but she then wants to come home quickly because she feels so unwell from effort of getting out. So no fun for anyone involved and I’m constantly stressed knowing she’s going to text me saying she’s unwell and needs to come home sooner rather than later.

Looks like DLA is way to go. Wish me luck!

Happy Christmas to everyone especially those stuck in the house caring this year.

Xx

12

You won’t have to do all 62 pages, you will probably find that some are irrelevant, but do check carefully. Maybe think about doing it in pencil first? If you reqested the form by post, if you get it back within the date given, usually 28 days, it will be backdated to the day you rang up. So get it back asap!