Scared about stuff in general...

[Jessica72]

Hello

Maybe I should be posing this in the Feeling Down section.. don't want to depress anyone.. but I suppose it's more relevent on here. Strangely enough I just about NEVER do this.. I have been using discussion forums for years but very rarely post about feeling like this. I even moderate a forum on a small parenting site.. and I DEFINIELY don't feel I can post on there.. for some reason. I only found Mumsnet a few days ago.. and I'm sorry, but you guys are about to cop it..

I have never suffered from depression.. and I don't think I am now.. but for some reason it all feels as if it is getting too much. I have 3 kids, Jordan (12) who has cystic fibrosis, Jessica, nearly 6, (who is fine.. touch wood.. thank God.. and other paranoid affirmations!!).. and Alex, 4 who has cerebral palsy and some other things (developmental delay in general.. hypothyroidism, dairy intolerence, eczema.. for starters.. but also a lovely sunny personality and the light of our lives... despite being VERY 'high maintenance')

DH is disabled with a form of arthritis.. and hasn't been able to work for years. He is in severe pain every day but even so has a 'full time job' just doing what has to be done in our crazy house! We have a good marriage and don't know what I'd do without him.. but just lately he has been very stressed, mainly I think because things seem to have reached breaking point in our house because we have been turned down (twice) for respite. And we were more or less 'promised' it by a duty social worker (we don't actually have one) who visited to assess us. It's the panel that turned us down.. they said he is 'too young' and that care overnight is a very 'high level of service'! But we don't need or want day care.. he is at school in the day.. we just want to SLEEP occasionally!) The reason we would like a little respite (we were told we would get 24 nights a year if we got past the panel.. we didn't!) is because Alex is a terrible sleeper.. NEVER goes through the night.. has only done so a handful of times in all his four and a half years.

On top of this, I am really stressed about Jordan (who has CF). He is really well and always has been.. but it's hard work keeping him that way...and this year, in the summer, he grew a nasty CF-type germ on his lungs for the first time (pseudomonas) and he now has to use a nebuliser twice daily for extra antibiotics. This has kind of kicked some kind of panic into action inside my brain.. have always lived in fear of him growing pseudo.. and it feels like the beginning of a slippery slope It's almost like the feeling of when he was diagnosed at 5 weeks. Despair.. and panic and some degree of hopelessness. Not helped by the fact that I joined CF discussion board a few months ago and now 'know' so many adult CF people.. and see how they struggle.. and how brave they are. .but some are too ill to even leave the house.. some are awaiting lung transplants (most people don't get them.. they die.. there just aren't enough organs) and they are so brave on there (although you mustn't CALL them brave, lol, it's a cardinal sin!) I have always shoved the lifespan thing to the back of my mind (it's still only 31years average ).. but I am not really a head in the sand type person.. I like to get all the info,, knowledge is power type stuff.. and people think I am strong. But I am not. I am really struggling. How do you live with the knowledge that you will outlive your child? He knows all about his illness.. but he doesn't think about life span.. and he makes comments sometimes about when he is old.. and when WE are old and he has to look after us.. and I just want to scream and cry.

I keep wanting to cry lately about really stupid things.. and I HATE feeling sorry for myself. I also think I have no right to feel this way.. nothing is REALLY wrong.. I have plenty of postitive things in my life and to feel lucky for.. and that if I keep thinking like this than something even worse is going to arrive from around the corner.. and teach me that I didn't know when I had it good! I have also started an Open University course which I am enjoying.. hard to find the time to study.. almost impossible at times in fact.. but SO nice to use my brain again. Can't even look ahead for enough to imagine getting my degree though (6 or so years!) as at the moment for some reason I am scared of the future. How naff!

Does anyone else ever feel this way? I sort of got my head around Alex's (with cp) probs ages ago.. (after a short period of self-pity to the tune of "WHY MY CHILDREN?!" - as this is pointless and pathetic.. and solves nothing!).. but sometimes I look at him and wonder what 'might have been'. And the poem Welcome to Holland (do you know of it? Written the parent of a SN child?) which used to help me, just makes me want to cry as well.

If anyone knows how to snap me out of this self-pity mode.. can they do so.. because I wake up every day trying to be positive.. and the most stupid things make me feels like crying my eyes out.. and I am not being a very nice mummy these days either.. or wife... .. or daughter for that matter.. (but then my mother is impossible anyway!!)

Sorry folks.. long and whiney I know.. but the minute I found this forum I thought 'Wow! People with situations like mine!' (So many SN forums are not very well populated.. or used.. this one seems busy.)

Love to all.. hope all your special little people are not giving you too much trouble.. and lots of happy moments..

Jess xxxx

PS Crikey.. this IS long... I do apologise!

Jessica - for starters don't apologise. You needed to offload and, hell, I'm not surprised, you have more on your plate there than anyone should have to put up with. I don't post here loads because TBH my dd's needs are minute compared to most of the other SN mums, but I just wanted to send hugs and to say that its OK to feel down, its OK to sound off and its OK to worry about the future. And I'm so that you can't get respite, FGS, what planet are these people on?

Keep talking here Jess - you'll get loads of support. Take care XX

Can't really add much that will help, just wanted to say you are not alone and I know a little of how you are feeling.

I still sit her and think why us? Why Ellie.
It all seems so unfair.

Some of how you feel will be to do with lack of sleep. I hate it when people moan to me that they are tired and I know they have a full nights sleep every night!!

No help I know, but just wanted to give you some sympathy and feel free to post as much as you want, however upset you are.

My first few postings on here was when I was really down and I did a huge e mail about how I was feeling

Love and hugs
xxxxxxxx

Sorry am no help, justw ant you to know

you do not need to apologise on here, you have loads to deal with right now so i am not surprised that you are feeling low, the respite situation sounds crap, if they can't provide any services for you then ask about direct payments, failing that go see your doctor and tell them how crap things are cry if you like and hopefully the doc will back up your case for respite, you sound like me in that people think you cope well, let them know that you don't at the moment and see if friends and family will help out, most of all take care of yourself.

Jessica

Sorry that I do not have any useful advice to give. You really have no need to apologise and have every right to feel the way you do due to your circumstances. You certainly are not being self-pitying, far from it.
From what you say in your post you are doing an absolutely amazing job but really should be getting some kind of respite. I just wish I could help you get some respite but am not sure how? Maybe your local mp?
Please keep posting as this is such supportive site!

Love and hugs ((())) to you Blossomhillxxx

Hi Jess,

Firstly please, please don't say sorry or worry about having a blub! The whole beauty of MN is that it is a source of support and that you do get to talk to people who are in similar circumstances. If you've looked through the past threads there are plenty of times when people (me included) have posted to offload some of their worries, or to have a justifiable rant, or sometimes just to seek some much needed support.

Are there any local charities that may be able to help you with respite? There's also a charity called Crossroads who may be able to help.

Crossroads

The response you got from the panel is crap . I just have the one dd and I've had several nurses suggest to me recently that I get some respite care, and you have three kids with different needs, not one. Is it possible to appeal maybe?

Are you a member of any RL support groups? I've found it has really helped me to meet other mums with kids with SN. It's nice as you can cut out all the social niceties of small talk & just cut to the chase of really getting to know people. I also find it helps that the kids I meet generally have different special needs to my dd, so I don't get overwhelmed by all the possible outcomes. I agree it's great to have lots of knowledge (I am a control freak & like to know too much about dd's condition ), but sometimes it can all get a bit too much, or so I've found.

Sorry, this is a bit short, but am desperate to go to bed. Hugs to you, xx

You sound like you have an awful lot on your plate and do cope really well with it, everyone is allowed to feel crappy no matter what their situation. Just wanted to say hugds to you sorry I haven't got anything more helpful to add.

Jessica - I hope you somehow manage to get the help you deserve and should have. God bless. ( thats probably not "pc" but, oh well.) x

I think there is a thread on the SN board about this very feeling. I can't be any help to you at all, I'm afraid, but my heart goes out to you. You have every right to feel sad - it's not naff. What has happened to your family is sad, and unfair and the way you are being treated about respite is awful. You have every right to feel the way you do, but obviously you dont' want to feel like this and I wish I had a snappy way to help. But I don't. Your older son sounds wonderful btw. I was very moved to hear about his desire to take care of you when you are old. What a lovely person he must be.

Wow!!! I went to have a bath and came back on to find SEVEN replies!! You guys are fantastic!! Why have I only just found this site??!!

Sallystrawberry.. I am studying Social Sciences.. it's fascinating.. but sadly involved some MATHS which is scary.. as I am scared of numbers! What is your access course? A lot on my course have done them.. but I was a complete OU virgin ;).. I love tutoritals.. they make me feel like someone other than Mummy.. and a proper student!

Chonky.. I will check out Crossroads. I had heard of it but only vaguely. Thank you. What is an RL support group?
Onlyjoking.. yes we do have support to a point.. my best friend is wonderful with my kids.. but I don't want to ask her to have Alex overnight (which is the type of help we really need because on the one occasion she did have him, he kept them all awake.. and she has two young children, it just doesn't seem fair. My mum is always willing to help.. but she can't really lift him anymore anyway (he crawls.. can't walk or stand unaided and needs LOTS of supervision)..and I know I can't ask her to have him overnight.. she is terrible without her sleep!

Yes I agree with you all about the respite. When we got the letter saying we had been turned down by Social Services (the first application was with a local childrens' hospice but they did have a respite criteria that Alex seemed to fit.. not just for terminally ill children).. I thought.. "well if they think we should be coping ok.. then we must learn to cope ok".. but that was before DH started getting so stressed. The other night.. after Alex has finally stopped leading us a merry dance for two hours.. when there was absolutely nothing the matter with him, .. I found DH downstairs crying.. (he doesn't cry!) and saying he felt ill and panicky.. and just couldn't 'do this' anymore' I don't blame him.. I feel like this often.. but DH saying this scared me! And I thought, re: this respite panel.. what are is the criteria exactly? Do they try to break you before they will help you, or what? Are they waiting for DH to walk out because he can stand anymore? Or one of us to have a nervous breakdown? Irrational I know.. but I found a site called 'Breaking Point' and there are lots of families in out position it seems.. which is awful.. and doesn't inspire me to believe that respite is going to happen for us..

Thank you all for all the hugs and support. You are great. I feel a bit better already.

Love and hugs to you all

Jess xx

PS Sallystrawberry.. yes Jessica is a great name isn't it! But sadly, it isn't mine.. I stole my daughter's name for my Mumsnet Username because all variations of my real name seemed to have been used (common as muck obviously! ;)) So I am happy to be Jess instead. Have always loved the name.. which is why I called DD it.. Great minds think alike!

And thank you Agy and Aloha.. you posted while I was! Agy.. who gives a stuff about pc-ness .. I say 'God Bless' often! And mean it! (Thank you xx) Aloha.. yes Jordan is great.. a little sod at times.. and grounded at the moment for losing his brand new mobile phone through sheer carelessnes!!.. but he is lovely.. very kind hearted and a sensitive little soul. Very proud of him today.. he swims competitively (helps to keeps his lungs healthy) and last night was presentation night at his club and we practically needed a wheelbarrow to get all his medals and trophies home.. (2 bronze, 1 silver, 2 golds.. (inc 2 trophies).. and an silver plate for attendance! (Which I think I should have 'cos I drive him there 3 x a week come what may.. )

Thanks guys xxxx

Jess xxxx

Well done Jordan! How fantastic. You must be bursting with pride. If you log in tomorrow and boost this thread into active conversations, lots more parents will be around and I can assure you, you will find that not only are you not alone, but people who know more than me (like Chonky does) will be able to point you in the direction of more help. I hope tonight is better.

Jordan sounds such a lovely boy. I know it's not good to give anything that might be false hope, and I certainly wouldn't dream of suggesting that a cure for CF was around the corner, but do just be reassured that there are hundreds and hundreds of scientists doing their utmost to find treatment, and there have been some small steps forward.

You have so much to deal with, I'm lost in admiration for you all really.

all is okay - go ahead and rant and say all you need to say to get it all off your chest.... I am sure I am not the only mum ( who like you) worries about having to cope and what will happen to our children.... think that is chapter one in the mothering handbook......

think it is crap that you are unable to get respite... sorry but don't have any suggestions there..... am in Australia not the UK.

I think you are doing an amazing job coping with all you have on your plate and not losing it.

fwiw - my heart goes out to you over the sleep deprivation... my dd1 ( down syndrome) slept through from the time she came home from the hospital - in fact she slept a lot. Have just had dd2 and she seems to be nocturnal.... You are amazing to have survived that long without sleep - I am struggling to keep it together after two weeks....

Well done to Jordan - brilliant

love the name Jess.... would have had a Jessica but named my dog Jess instead so figured by the time the dd's came along - could not really name them after the dog......

welcome to mumsnet too... hope you find help and support - the mums on the sn board are a good bunch - very helpful and knowledgeable.

Hi i'm new here too, i also have one child with SN but not physical ones, however i work with SN all of whom have respite and i know from talking to their parents that you have to jump up and down lots to get it. If you want it keep asking, i've heard quite a few parents recommend the home from home service and young children can be more suited to this, plus if you are having trouble with 'services' the parent partnership project are good people to talk to and can offer advice and information on all sorts

its really good to know that there are people like you who are able to talk openly and off load, this is really what i need to do but...

hopefully you will get lots of support on here, from what you have told us you certainly deserve so keep going and talk away as much as you need to

hello jess, you are not being self-pitying and even if you are you are allowed to feel like that occasionally You sound like you are doing marvelously.
The kids sound amazing. I am sorry you are having problems getting resite, we are too. i am trying crossroads aswell atm as they seem very willing to help,. I know they helped my gran go shopping once a wekk as they sat with my grandad foir an hour.
It must be very hard dealing with a sick child and a child with development problems at the same, plus your dh having arthritis. nighmare. But you do sound like you are coping really well and well done on the OU course. Are yuou mad woman?!
think we all do the why me? scenario occasionally(alot)

Thank you so much everyone. Is there anyone (in the UK) who has experience of being turned down for respite.. and then managing to get it eventually?

Lots of love

Jess xx (After another night of Alex screaming at nothing! )

We're at the hozzy today so will see the nurse that mentioned respite care to us (hopefully). She used to do respite care, so will see if she has any more ideas.

RL = real life (sorry, possibly a chonky-ism, not a proper MN acronym). We were put in touch with a fantastic support/play group by dd's paeditrician. Through going to that we've found out about other local suppoprt groups, including a local toy library for kids with SN where you can loan the really swanky SN toys that cost a flippin' fortune. Have met some great mums too.

Also, have you seen the thread somewhere (will try & find it later) that says where some of us live? Might be that one of us lives near you. I've met a lovely mum through MN who lives really quite close to us.

Jessica, I can't believe how much you have got to cope with. I think you're amazing and your family sounds gorgeous. I was feeling really depressed a while back until I got on here every day and ranted my way out of it! Sometimes, I think you have to give into the negative feelings, just to come out of the other side alive and more positive, if that makes sense. Sending lots of love...
ps Have you tried Barnados Link respite? Do you have it in your area? My DD gets 12 overnights a year and 6 'short' breakds (Sunday afternoon, that kind of thing). Let me know if you want details...

Thanks Jakbrown, I will check out the Barnardos one. I haven't had so much input in ages! It seems that we were forever having respite mentioned to us (for literally years!).. by physios.. OTs.. people who witnessed what hard work Alex is (and that's just in the day! ) and for ages we said we didn't want to go down that route.. and when we felt we really NEEDED it for the good of all of us.. and went down that route.. we got send back (!).. no now nobody that sees Alex (professionals anyway) is interested!

Anyway, you lot have made me feel so positive that I am off to a step class now that I haven't bothered with for weeks. I am a lazy cow you hates fitness classes.. but (usually) forces myself to do them anyway.. and I always feel better (mentally if not physically ) for it.

Thnak you again.. ( I'm getting boring now, lol! all these thank yous..).. but the support from just talking to you ladies is wonderful!

Jess xx

Crikey Jess - a step class....are you nuts or what? that said I've been known to pund the streets myself to get rid of the stresses and strains.

Pund?? Pound

Dont really know much about Respite - we have been told we should apply for it but feel to guilty about sending J away for the night!!

What I do know though is that if we need things for our kids we have to jump up and down, stamp our feet, knock on every door and shout very loudly before we get anything.
Thats not Fair!!! We have enough to deal with without having to fight for services we are entitled to!!!

Think it appalimg that you have been turned down for resipte. Have you contacted your MP? I would chase up Crossroads too - a family I know use them and they get respite every other weekend.

I love Mumsnet because you can come here rant, rave, cry, laugh and giggle and no one minds because you all understand what life is really like when you have a SEN child.

Hi Jess - welcome to mumsnet. As others have said, don't ever feel you can't offload on here, its what we all do from time to time. There are a lot of us who understand from first hand experience, and a lot of others who will be just as great with support and warmth.

The thing that really struck a cord with me was you ds1's shortened life expectancy. My dd, though she has a totally different condition, has a reduced life expectancy too. It's not something I talk about much - I think I am still a bit in denial about it. Well, you can't dwell on it can you? But a few things recently have made me think a bit more about it. I cannot express how completely I understand how you must be feeling.....and my heart goes out to you.

Also - respite - I cannot understand how this panel can have turned you down. I think you need to try and find someone who can fight this for you/with you. I don't know who that could be.... but you have enough on your plate. Sorry, that is maybe not a lot of help. I don't know enough about the system. But I think the sad fact is you probably do have to be on the brink of breaking before anyone will listen. I would get back in touch with SS and tell them that if they don't do something you are going to end up costing them a hell of a lot more than some overnight care would because you are going to be a broken family etc etc (not suggesting this is the case btw but I think you have to really push things to their limit with SS).

I wish I could wave a magic wand for you.....

I have come back to this thread think i ought to explain and offer my ear if you need it. i hestitated in posting the truth this morning in case it upset you and I have thought about it and think you may want or occassionally need to ask things or have an understanding from someone who knows what it is like to live with both CF and other development problems.

My sister had CF and my daughter (who is now) 5) has development problems. She has microcephaly, mod/severe global delays amongst other diagnosis's. She doesnt sleep well either and i find it a real strain. We have no formal diagnosis for dd so we have no idea what her life expectancy is. I am fully aware that some children with microcephaly have limited life expectancy and I find it hard to deal with aswell. i think it is pretty normal to feel like that.

i often feel why me? i can be very self pitying at times. I had genetic counselling for CF and I wasnt a carrier and now I am having genetic counselling for other things in the bid to find a diagnosis for dd. They are testing my daughter for a recessive genetic condition and tbh it has messed with my head a bit as i know the problems my mum and dad went through knowing theat CF was recessive genetic etc. I always felt guilty that it was my sister who had CF and not me. She got the dud genes and I got the healthy ones, i find that so hard but she was never resentful. She was amazing tbh and I do miss her so much.

as for the psuedamonas (sp?), please dont beat yourself up about it. it is very common and it is easy to get under control now. Most of us carry psuedamonas without knowing so it is almost impossible to keep your son away from it iykwim

sorry for waffling on and I hope I havent upset you, but I just thought I should say something