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!

aaarrrgghh, that sounds like i am saying no-one else is understanding They are!!!! eeveryone is brilliant on here

Hello folks

Back from step class... bbleeeurrgghhh! All the routines had changed in the weeks that I have been too bone idle to go so I looked a right wally.. and even feel off the step once!

heartinthecountry, what condition does your dd have iydm me asking? I know what you mean about denial. I don't do denial usually.. but I think there is an element of having to when it's your own child... and it's about life span. I know what's going on in my head to some extent.. the recent germ Jord has been growing has brought it all to the fore. Of course we have been living the whole CF thing for twelve years.. but he has been so well that it's very easy to.. maybe not pretend.. but not think about the serious stuff to the extent where you almost believe that stuff is going to jog along merrily for ever.. if you just keep doing the treatment.

Santafio2.. of course it doesn't look as if you implying that nobody else understands.. every single contribution to this thread has been so helpful to me and all in different ways .. it's like a small but signifcant part of the load has been lifted.. (guess that's why it's called offloading!). I'm so sorry about your sister.. how old was she? Doesn't it just feel as though some families (like ours, lol) are total genetic nightmares!??! We are pretty sure (please God!) that Alex's condition is (the one with the type of cp) not progressive or life threatening in any way... but he doesn't have any proper diagnosis either.. they just stuck the cerebral palsy 'label' on as a sort of description. We have been down the route of testing.. I used to trawl the net for hours looking for answers and reading long lists of clinical features to try and 'find' Alex among them. He has even been tested for quite obscure things (like neuro transmitter disorders, which required a lumbar puncture) because of me getting a bee in my bonnet.. and then getting on to the neurologist (who luckily was very good with 'pushy parents' which is what I have become with regard to Alex! ) Everything has always been negative or 'normal' but there clearly is something very wrong, neurologically. Even an MRI showed nothing.. but he last has one 3 years ago and will have another when he is 5. He was a full term baby (9lb 12!) with a normal delivery.. although very ill at birth. I go through phases of wanting answers with Alex.. at the moment I have eased off because he makes such good progress.. and he such a happy child.. and as my DH is always saying' Alex is Alex.. what will a proper diagnosis do for us'. (The neurotransmitter disorders can sometimes be treated... that was why I went off on one there!)

Thank you for the common-sense about the pseudo.. and Jordan. I am still hoping we can get rid of it for a good long time.. it was v disappointing when he grew it 'again' (if it had ever really gone away) in Sept after having grown if for the first time ever in June. I hope the longer course of oral anti biotics (cipro) as well as the nebulsied one (colomycin) will do the job. Actually, I am sorry for going on.. this is probably more upsetting for you as you have been there with you sister.

Jaysmum... what you said about respite and not wanting to apply because you feel guilty about sending J away.. I so know what you mean. .this is why we only applied for the first time this time last year.. and then only because a new friend who worked at the hospice brought me the form.. and this is why (having now been turned down by SS as well) that I find it so hard to fight this particular battle. One thing about Alex is that his social skills are his one main strength.. (despite limited speech) and he loves people.. everyone really.. so I know he wouldn't suffer from the speparation..but depsite needing the respite so much, I would still beat myself up if we got it! (How screwed up am I, lol )

Great talking to you all..

Jess xx

your son, Alex, sounds very similar to my daughter. i am pretty sure she has a form of CP but we have never had this wrote down although professionals have hinted at it. She is very socialable aswell even though her speech is limited. kwym about trawling the sites aswell. I used to go on specialchild regualr trying to fit her in iykwim

Dont worry you dont upset me about my sister, i like talking about her! She died 2 1/2 years ago and was 21 she actually died of an embolism following surgery which is very rare, but happened all the same. She used to talk about death openly and wasnt scared. She always said when she was going to die she wanted it to be quick and not know it was going to happen iykwim. So I suppoose she got her wish. bit morbid I know. She did have a heart and lung transplant when she was 18 and was well for about the year following her transplant, she turned into a woman and she had a real zest for life. Even though her life was short she packed so much in and was such a charachter. Her Cf was severe though and she was in and out of hospital throughout our childhood until my mum started doing her IVs at home through her vascuport. Until then the hopspital was our second home

She was guinea pigged for most the drugs going now and thank god things have changed for people with CF. When she was first diagnosed they gave her a lifespan of 7, then when she was 7 they said 15 - so she proved them wrong anyway. To think CF was always classed as a childhood illness and people are living healthily into their 40's is great. i so wish my sister could have been one of them, but it wasnt to be. But it gives great hope to you and your son and family. Things have changed dramatically in the last 20 years, heaven knows how much they change in the next 20! It is a sign the treatment for Cf has improved when you hear regular of 'adult' CF centres opening.

sorry i am most probably waffling

glad you enjoyed your step class

Santifio2... LOL re: specialchild.. I have been there and literally got the tshirt.. so has DH.. and Alex is featured in the diagnosis search section.. although the picture is quite odd.

Your sister sounds like an amazing person. It's so sad that she only got a year after her transplant. I have become quite close friends with a guy called Andy (he is 41) from the CF trust message boards.. he had his transplant 3 years ago last week and he is doing great. But even I worry about rejection and I haven't known him long.. but we chat a lot and I find myself worrying about his future. We were going to meet up with him in the summer.. I had talked it over with Jord's cf team and Andy had talked over with his.. and we were all told that the risks of cross infection were extremely minimal (he hasn't grown any germ since the transplant) but then Jord grew pseduo and that was that! Can't be messing up Andy's new lungs (or twin air bags as he calls them!

I'm rambling now.. I must go and do some study.

Talk you folks later I hope

Jess xx

she actually lived for three years after her transplant, she just had 1 really good year where she was normal iykwim She had pseduo after her transplant aswell! but they thought the woman who's organs she had most probably had it, so it was present when it was transplanted. Nice to hear your friend is doing so well. Where did he have his transplant? My sister had hers at papworth and they were amazing, sadly she died there too and have only been back there once and it was very painful.

i have just had a look at alex on specialchild! he is very cute! how is he doing physically now? dd is being tested for smith-lemli-opitz-syndrome (SLOS) its a genetically recessive metabolic syndrome. There is treatment though so i suppose it would be a good diagnosis for her. i am not convinced she has it though!

Sorry if i have bored you, i am in a waffly mood today

You're not boring me.. far from it! Thank you for saying Alex is cute.. I think he's cuter now. How do you make links on here? Do you just type them? babiesonline.com/babies/a/alexwj/.. this is his page anyway.. with some recent pics on.

Sorry for geting the years wrong about your sister.. I misread that bit. Andy had his op done at Harefield I believe and he attends both there and the Brompton.

SLOS.. never heard of that one.. I will be having to reserach that now, lol..! (Having a job not doing it right NOW.. but I really most go and do some study.. Dh is about the switch the puter off anyway, as he is building a new desk..)

Bye for now..

Jess xx

Hi Jess - my dd has Aicardi Syndrome - it's a rare genetic disorder (though not hereditary) which manifests itself in learning disability and epilepsy. So, very different to Jordan.

It's the epilepsy which will shorten her life I think. tbh, I haven't looked too much into how. But I think the massive amount of electrical activity going on in her brain will someday mean it just can't carry on. Or she will have a massive seizure and her heart will stop.

I think the reason I try not to think about it is a) as you say you almost have to when it is your child. Otherwise I would spend every day sad instead of enjoying her. And b) I have no real idea of when it could be, so in a way it is still hypothetical. Generally girls with her condition are lucky to live to 10 years old. But she is at the less severe end of the spectrum and I know of a girl who is 17, and have heard of a woman in her 30's still living. So who knows? Our Neuro said she expects to see Willow as a young adult at least.

Also, as Fio2 talks about with CF, I just don't know what advances will be made medically in the next few years. The drugs available for her type of epilepsy now are so much better than even a few years ago. So that gives me hope.

Sorry - don't mean to waffle on about my own dd.... but it's good to think about it actually....

Jess - not sure where you live but I have just come across this website shared care network . Although it looks like some of the schemes are run by SS, I don't think it would have to go to a panel in the same way as the respite is provided by volunteers. Anyway, might be worth a shot.

Heartinthecountry.. thank you for the link.. I will check it out ASAP (am performing a contortionist act at the moment in order to reach the keyboard.. whole living room is upside down due to DH making a new desk.. and us getting a 'new' (well somebody else's cast off, lol!) three piece suite!)

Was going to apologise for 'making' you talk about lifespan etc, until you said it was good to focus on the positive stuff.. which is very true. A 'cure' (or as good as) for CF is not far away.. just need to keep believing it wil come in time for Jordan and so many others. I so hope your little girl stays well for a good long time ((hugs))

Thanks load, Jess xx

Unfortunately the nurse who knew tons about respite care wasn't about at the hospital today. However, I've just come across a 'Contact a Family' leaflet that says that they give info. to parents about childcare & respite care. Their number is 0808 808 3555.
Had a look at your ds's website - he is gorgeous! I really want to get some photos posted of my dd, meanwhile I'm enjoying cooing over everyone elses.

HITC - I've been thinking a lot about your dd's story recently. It really struck home with me when I was in hospital with my dd this weekend and we had to go through her history again. This doctor kept asking about her 'mental delay' which I thought could have maybe been worded better. I'm not a PC militant, but I don't need to be reminded every other sentence of my dd's learning difficulties! It reminded me of your point that the kids are not part of a medical textbook but real people. I felt like telling the doc this, but didn't have the energy as it was 05:00! Hugs to you & your dd... Sorry to go off on a tangent

Hi Jess, Welcome to Mumsnet - I am so glad you found this site as everyone is very understanding and kind. My daughter was born at 26 weeks and has a tracheostomy due to a floppy airway. She also has psuedamonas and has had several flareups and I know how difficult it can be to clear it up. Reading your thread I can't believe you don't have respite care as it sounds like you have so much to cope with, we get carers coming in four nights a week but we only got that with the help of an excellent comm.nurse, she managed to get it through panel due to the fact we were getting up nearly every 1 to 2 hours, I really hope you will manage to get the respite as I know how the lack of sleep can really get you down. I so understand how you feel like crying at everything and it is difficult to keep picking yourself up, I just wanted to send massive hugs to you and say you sound like an amazing mum and I really hope everything turns around soon for you. I f I can help at all re. respite just let me know. Take care.

Thank you Chonky for trying .. and Rivers.. I'm so NOT an amazing mum.. honestly there is nothing amazing about me. Maybe I have a way of describing our situation that makes me sound amazing.. but I think I just told it like it is.. but I'm seriously not doing anything special, just dealing with 'cirsumstances' as they are.. ane often, not very well. But thank you for your kind words. Does your DD have CF? Obviously I guess, re: the pseudomonas flare-ups (pseudo doesn't really affect anyone else to any extent I don't think?). Will she always need the trachie? It must all be a lot of hard work and I'm glad you are getting the respite you need. So you have carers come to your house? This has been mentioned to us (although not offered obv., a lot of options get 'mentioned').. but at the risk of sounding picky, I know it wouldn't work.. we have a very small house.. and I also wouldn't want Alex to get the idea that someone is coming to look after him at night and therefore he doesn't HAVE to sleep. He knows what night time is all about.. and that Mummy and Daddy are not best pleased at having to get up to him. If he went away for the night I would want them to work on a normal night time routine. We can but hope can't we, lol!

Actually he didn't sleep too badly last night.. but I have woken up with a head cold and feel totally pants.. must be the shock of the step class yesterday.. ;) Or getting a bit of sleep...

Do others have days where you feel that you would do anything.. ANYTHING (almost!) to stay in bed.. and not face the day? Today is one of those!

Lots of love

Jess xx

Hi Jess, I'm glad you managed to get some sleep last night and I def. have days where all I want to do is stay in bed especially when I have been up at 2,3,4...!!! My DD doesn't have CF but having the trachie is the cause of the psudamonas and when she gets the flare ups she gets a high temp and the smell of her trachie site is quite strong! We do have the carers coming to our home but luckily my DD doesn't have trouble sleeping it is just she needs a lot of suctioning at night. Hopefully she won't have the trachie forever but it is quite difficult to remove due to scar tissue. I hope you get a good nights sleep tonight and your cold clears up soon!