How do you cope with long term health needs?

[Kubalai]

Having a rubbish few weeks and feeling like I'm not dealing with it well at all. Then I feel even worse because I know so many have DC with much worse problems/are in hospital a lot more and cope much better.

DD2 has got a congenital lung abnormality, so gets frequent infections requiring antibiotics and admission to day case/hospital. She needs regular meds several times a day, physiotherapy/exercises and has appointments with GP/consultant/physio/HV etc really frequently. Her sleep is awful due to coughing and temperature spikes due to infections. She can be quite well on the regular stuff but lately has not got over one thing before starting the next. I'm exhausted and tired of it all, plus sad that she never gets to just be a normal toddler. DD1 is really affected by the disturbed nights/stressed parents/lack of attention and I feel awful for her too.

Both DH and I work. My work is increasingly seeming like a hobby. I am so unreliable and just feel like I do everything badly.

How do you deal with times like this? Why don't I deal with it better? Sorry for the rant I'm just gloomy today.

Oh I am sorry.
That sounds really tough.
What I would say is that this winter has been dreadful for respitory infections.
My ds2 has been hospitalised twice!
Is there anything the paed could give her to help her sleep?

I think that when things get bad its normal to not cope, the exhaustion alone makes it hard to think rationally and then add the worry on and everything gets too much.

Can you try to get some "me time" or a day out with your eldest daughter?

Sounds like you need some sort of respite break, is there any chance of that? Social services and carers centres have access to (very) small grants for carers. Even a couple of hours break can help a lot. Hope you get some support.

Thank you all

Sorry to hear about your daughter Badvoc. Hope she's ok now? I think this weather and the continuous bugs have definitely made things harder.

Sirzy you're right, and when I had a word with myself earlier, I forced myself to acknowledge that it's the tiredness that makes me so low and emotional, not necessarily that I'm losing it! I really wish I could do something 1-1 with DD1 - it's always her that can still go to child care, or off to a friend's house. DD2 gets so much of me and DD1 so little. This is something I need to address.

Isabeller I have rung the HV team and asked for support. They are going to come and see us so hopefully can offer something. Even if it's just a chance to chat things through. I think that's what never happens in all her appointments - the facts are discussed but not the impact.

DH worked hard to give me some time at the weekend, but I think I've got so much going on in my head that I'm almost paralysed to make use of it! DD2 then deteriorates again...

I know there are so many worse of than me, and so many dc iller than dd2, but it's very hard to get perspective.

Thanks for kind words.

is there a support group for her specific condition? find one or start one... or a general one like - here on CAF website -
www.cafamily.org.uk/medical-information/conditions/l/lung-disease/ British Lung Foundation www.blf.org.uk/Conditions/Children

Helpline: 03000 030 555 (Mon-Fri 10am-6pm)
Email: [email protected]
www.lunguk.org

The Foundation is a Registered Charity in England and Wales No. 326730 and Scotland No. SC038415, established in 1985. It provides information, advice, support and guidance to anyone affected by a lung condition in the UK. The helpline is staffed by a range of specialist staff who can advise on all aspects of living with a lung condition including welfare benefits, treatments and medications, travelling and arranging oxygen, children's lung conditions etc. They also provide support through a network of Breathe Easy groups, a penpal scheme, web forums and membership scheme.

join and speak to others with similar conditions get a pen pal etc.
use her condition to get on schemes and breaks for chronically ill children. ok she wont be a normal toddler - but perhaps she will get some "advantage" and even special treatment... for all your family.

tell yourself you mustnt be sad for her, it is all she knows and she needs you to be positive if she is to manage life with a chronic condition... read positive stories eg young people with CF who carry on and do things...

dont compare yourself to others worse off - you know that compared to her peers she has it worse.

have you claimed DLA? claim it and use it to employ a trusted babysitter to get a break. even to go sleep in the other room...

go to gp and ask for referral to a counsellor to talk it thru - CBt type work on strategies to deal with your stress/anxiety . call the BLF today and talk it thru ...

for example - she can look forward to going on specialist activity camps when older eg www.gosh.nhs.uk/parents-and-visitors/general-health-advice/leading-an-active-lifestyle/activity-camps-for-children-with-health-problems/

there is support out there

OP - Don't be too hard on yourself it sounds like you are going through a very stressful time right now & lack of sleep will only make things worse. My dd1 has Chronic Fatigue and although she isn;t severely affected it takes it's toll emotionally & physically. I have a younger dd2 who I feel is missing out on so much being stuck at home all the time. When I am tired (which is often!) things do feel much worse.

cest - think I will take a look at that link too. Thanks. How is your dd doing now? We posted on the same thread a few months ago.

round - tks for asking; much the same...some better days tho. yes it is hard to meet all needs...waiting on geneticist appt for dd, headache specialist neurologist thinks might be migraine disorder;

but she went to one school lesson (one hour !!) before easter break....hoepfully will continue when they go back next week..

Oh dear.
Tooth trouble now.
Dh will go mad...we really can't afford it this month :(
Got am emergency appt at 2pm tomorrow.

Really feel for you. It is exhausting looking after a child with medical needs. I don't really have any new ideas but I would second trying to join a charity/support group of parents looking after children with the same condition. This was a lifeline for me in the early days. And also trying to get even 2 hours respite a week to do something with DD1. We are lucky enough to have a charity where I live which used to provide just this and it made a huge difference. I think SureStart may do something similar.

Do you have an organisation for carers near you? They would be the best first port of call to access different help.

Good luck. Be gentle on yourself. It sounds very tough for you at the moment.

cest - glad there are at least some better days. I really hope she can manage an hour of school when they go back. It's a really long road for you isn't it, we have at least had a definite diagnosis now which even though it doesn't change anything feels wonderful.

badvoc - ouch at the tooth, hope its sorted tomorrow

kubalai - Have you tried Homestart, if you have one child under 5 they should be able to help & are flexible over the help they can offer.