Viewing 40 posts - 1 through 40 (of 77 total)
  • Finding it hard to cope
  • Premier Icon funkmasterp
    Full Member

    Sorry about this, I just need to get this out and doing so relatively anonymously has worked before. A couple of months ago the good people of STW helped me through a difficult time. My new born son was taken ill at only a few days old.

    Unfortunately, two days after returning home he had a second incident. He began choking whilst breast feeding, turned blue and had great difficulty breathing. We returned to hospital in an ambulance. This time was a longer stay than the previous one due, in part, to him having two ALTE’s in quick succession.

    His blood oxygen was extremely low, he had to be given oxygen and was (still is) breathing at an accelerated rate. A second set of X-rays revealed that there was still something in his lungs. Cue visits from several specialists and the result that he has severe reflux. Medication is prescribed and after a week we return home.

    Both my partner and I are still shell shocked from both events, but starting to settle in to the routine of dispensing his medication and keeping him on a strict three hour feeding pattern because of the reflux. Everything is going okay, then a visit from the health visitor reveals he has an Hernia. Not a serious thing, but on top of everything else, not great either.

    We were referred to MRI for the Hernia repair and put on a waiting list. Two days later Eb (my son) is screaming for a prolonged period, drive back to MRI, Doctor struggles to get Hernia back in, placed on emergency list. Repair was performed after two days of waiting in Hospital.There were some concerns over operating due to his breathing issues.

    Return home and everything seems to be going okay.Then he stops gaining weight and starts passing blood in his stools. Back to Macc children’s ward, diagnosed with a milk protein intolerance. The result is having to have milk that tastes foul. Feeding becomes a pitched battle, he is starving, but won’t take the feed. Back to Macc after two weeks of this and no weight gain. Dietician gets involved and puts him on Infatrini, a high calorie milk with proteins broken down to a greater degree.

    The wonderful staff at Macc insist on taking Eben off us for two nights. They say we look physically and emotionally spent. After two nights rest, we bring him home and all seems to be good. He is feeding well and appears to be gaining weight.

    Jump to Thursday of this week and we have an out patients appointment with our respiratory guy. He’s not happy with the weight gain and thinks the accelerated breathing may be playing a part. We are sent for another chest X-ray. We get a phone call later that day to say they want to test him for Cystic Fibrosis, we have a sweat test due on the 20th. We’ve also been referred to a Cardiac specialist (who we have seen before and who did an echo and gave the all clear).

    My partner hen finds an unusual lump in her breast. Her Aunt is currently undergoing Radiotherapy for breast cancer. I feel emotionally drained and on the verge of snapping. Trying to hold it together and take one day at a time. I’m not a religious man, but find myself praying that my son doesn’t have CF, he’s been through enough already. My partner has an appointment at the breast clinic on Tuesday.

    I’ve found myself wandering around bike shops and putting together builds online, just to try and stay sane. At work on Friday I spent a couple of hours just staring into space on the verge of tears. Apologies for the bad sentence construction and rambling nature of this post. I just had to get this out, haven’t tried talking to friends or family due to getting too upset.

    They are both asleep now, my lovely woman and brave boy. Don’t know what I’ll do if anything happens to either of them.

    Premier Icon chiefgrooveguru
    Free Member

    Sounds like a really tough situation – hoping things turn out ok for the three of you. Good luck!

    Premier Icon Teetosugars
    Free Member

    I have no words that can offer anything of value, but just know thoughts are with you buddy.
    Hope you get it all squared away.

    Premier Icon brooess
    Free Member

    That’s bloody tough.
    Get on the phone to yr GP and let him/her know how you are so they can give you some support. You shouldn’t expect to deal with stuff like that on your own…
    Best wishes

    Premier Icon user-removed
    Free Member

    Crumbs – sounds like you’ve all properly been through the mill. Very best of luck with the next few months and hope that getting it all of your shoulders helps a bit.

    Premier Icon d45yth
    Free Member

    Hell, I’ve been having a few problems myself of late, but reading about yours makes me think mine are nothing.
    I don’t even have a family of my own, so can only guess what it must be like. Not sure what to say apart from I hope everything works out for you all.

    Premier Icon Jrrr
    Free Member

    I honestly cannot compare to what you are going through, but i urge tostay positive and i hope you come out the otherside stronger than ever having conquered these challanges 🙂

    Stay strong for them

    Premier Icon bradley
    Free Member

    I have recently (the end of December) put myself and my fiancée or ex, I don’t know any more, (partner of 7 years) and my 2 children in an awful situation where I can’t see my children at the moment (it won’t take a rocket scientist to work out what’s going on) and it’s my fault.

    I’m struggling to sleep and struggling to deal with the guilt and it’s having a huge knock on to my emotions, home life, work life, resulting in an overdose of prescription antidepressants 3 weeks ago and it’s all because I can’t cope in dealing with what I’ve done and what is happening. I’m now getting help and have found myself various things to occupy myself to stop the mind from working over time thinking of all the bad shit and worse case scenarios.

    Go get help. You don’t have to do it on your own buddy. There are plenty of groups out there to help. I’m getting onto TalkingSpace at the moment after psychiatric team said I’m not a severe case and do not warrant their involvement…even though I want it.

    Best of luck, my youngest had a ropey introduction to this cruel world (3 weeks intensive care) and apart from what I’ve put us through the last 4 months they were the worst 3 weeks of my life. I would take all the pain in the world if it meant my kids didn’t have to suffer. Email in profile if you want someone at the end of the phone.

    Premier Icon madjak
    Free Member

    I can’t imagine what you’re both going through with this but you have my very best wishes.

    Just take things as they come and try to see positives. You’ll get a break for the better soon I’m sure.

    Premier Icon wiggles
    Free Member

    Just Focus on the positives and enjoy as much of the time you can with your family. I know how it feels being the one who has to stay strong on the outside and hold everything together.

    Doesn’t stop you falling apart on the inside, I have had a horrible year in many respects and have just had some terrible news I’m not quite sure I am ready to deal with and sometimes find myself bursting out in tears every time I am on my own.

    Just stay strong for them and you will make it through.

    Premier Icon Pook
    Full Member

    Funk, first of all know that you have an entire forum of people here with you. Many of them will have been through what you are going through or similar and it may only take time for that experience to pop up and advise, strengthen and reassure you.

    You are in the right place in that you have known you need to ask for help – there’s no shame in that – and there will be a lot of advice here that will be difficult to take but will ultimately help you as and when you need it. I know from personal experience.

    You’re being fantastic and I’m sure both your partner and little one know that (even when tiny they know), so don’t worry about talking to others – family and friends are there for exactly these moments and it is these moments in which they pull tighter and ultimately make the family tighter.

    I don’t presume to know how you get on with those closest to you, but even asking for a coffee with someone to get their take on something can be a help – even if all it is is the relief of you getting it out there and off your back.

    If you only use the forum for escapism, use it. If you need it for more we’re all here.

    Premier Icon bazwadah
    Free Member

    That sound like a really tough set of cards your family has been dealt. You said the staff at the children’s ward have been wonderful so that is a positive to focus on – they will be doing everything to get you and your family through this. I have seen people offer the advice of ” remember to take care of yourself too” and its true – try to get rest when you can, eat properly and do whatever you need to ‘keep sane’. if you can eventually talk to friends and family then I’m sure they will be an invaluable support, however you know you can always offload, vent, scream and shout on STW…. we are here for you mate.

    Premier Icon racefaceec90
    Free Member

    don’t know what to say but i wish you and your family my best wishes and good luck.

    Premier Icon dannyh
    Free Member

    Be strong, but be yourself too. Probably a ridiculous thing for me to say. Work out how best you can serve the both of them, but realise that your partner is a grown up too. Work out how to take the pressure off of her, but with a focus on your son, that way you will be working in the same direction.

    We had a much, much less serious worry for a week or so with our daughter when she was nine months old. We were away in a foreign country and she got I’ll, probably only with rotavirus, but we didn’t know that to start with. She wouldn’t take any food or liquids and was really struggling with the heat (she still wanders around in a t shirt when we are all wearing jumpers – she just doesn’t do hot weather well). Anyway, getting fluids into her was horrendous. It involved syringing electrolyte stuff into her mouth and forcing her to swallow it. Sometimes by holding her nose. I am probably being a big girls blouse, but at the time it was heart wrenching. However, after the first few times we just went into ‘we know what is best’ mode and got on with it.

    You also mention excellent hospital staff. Use them. That is what they are for (and want to be for). Even if it is ‘just’ a nurse, ask for them by name again and get them to refer you on if necessary.

    Good luck, and don’t be afraid to use other people to help.

    Premier Icon scaredypants
    Full Member

    We’re having a shit time at home too – different to yours but still pretty shit. Took me several months to work out that I wasn’t taking it as well as I thought I could but I feel better even just for realising that and starting to let people help me deal with it.
    Good luck mate. Be strong but accept help and love from others, including your wife.

    Premier Icon funkmasterp
    Full Member

    Thanks for the kind words, moral boosting and offers of support. Really hope the CF test is negative, been reading up on it and his life expectancy would take him to my age, mid thirties. That’s nothing. He’s so happy in himself, always smiling and playing. The breathing doesn’t seem to affect him in any negative way. I just hope the Drs are being cautious and trying to narrow down the cause by ruling everything out.

    Can’t even begin thinking about my partners situation. Hopefully it’s just the result of breast feeding initially and not something more serious. The 20th feels like a life time away. Can’t eat or sleep and just feel sick all the time.

    Might get in touch with GP. Suffered with depression when younger and just have visions of them throwing tablets my way.

    Premier Icon wiggles
    Free Member

    Hope everything works out ok for your, at least they are both getting seen and getting tests done, which can be easier said than done.

    Didn’t want to put to much of a downer on this with my first post, but seing as others have joined in the venting… might as well get it off my chest.

    Found out recently that the baby my OH is currently pregnant with has not been developing correctly (brain mostly) and is not going to make it… got two other healthy kids so trying to stay strong for them but is not an easy time.

    Premier Icon kimbers
    Full Member

    I dunno what I can say that will help other than offer manhugs across the internet

    cant imagine what you are going through right now, just to remind you that youve done everything you can so far and its important to look after yourself so you can keep supporting everyone else

    Premier Icon I_Ache
    Free Member

    I’m a heartless bastard and usually don’t really care when I read stories like this. But yours has really struck a chord with me.

    I sincerely hope that your lad gets better soon and that it is just a milk gland or similar with your wife.

    I can’t really give you any advice in holding it together to be honest but when I am feeling a bit down our stressed I find a ride really helps. Try and take a day off to ride somewhere you love and hopefully you will be able to sort of reset yourself.

    Premier Icon bradley
    Free Member

    I would definitely go and see your GP. Anxiety, sleep depravation, lack of appetite. It’s obviously all getting a bit much and understandably. Avoid tablets if possible…

    Premier Icon Pook
    Full Member

    Having spoken to GPs about stress and depression tablets are not the first resort. Relaxation, de-stressing and peace of mind are their first steps.

    You sound strong – your comments on your family show that – but you need to remain strong and looking after yourself will allow you to do that for them. You’re not alone in this, but I would advise letting your family too.

    And go to the GP. They will help

    Premier Icon Tom_W1987
    Free Member

    Cystic Fibrosis is one of the diseases that has a good outlook in terms of future treatments. Just thought I’d try and add a little positivity that you can bear in mind when you worry that he might have it.

    😐

    Really hope the CF test is negative, been reading up on it and his life expectancy would take him to my age, mid thirties.

    In 35 years time we will have cured CF or at least be able to treat it so that individuals have an average lifespan near that of healthy individuals. 35 years is a hell of a long time in terms of Medical Science.

    Premier Icon unknown
    Free Member

    To be blunt, you can cope because you have to cope, but you don’t need to alone.
    Be strong for them if you feel you need to but don’t neglect yourself, take an hour or two, find a mate and let it out. It doesn’t have to have a point, but you’ll feel better afterwards and likely have someone to support you too.

    I can’t offer any advice on the rest of it, other than that there’s a good chance one day you’ll look back on this as a really shit time, but one that passed and got overtaken by all the good times that are yet to come.

    Premier Icon funkmasterp
    Full Member

    Found out recently that the baby my OH is currently pregnant with has not been developing correctly (brain mostly) and is not going to make it… got two other healthy kids so trying to stay strong for them but is not an easy time.

    So sorry to hear that. I hope you, your wife and children are finding ways to help you cope.

    Unknown, you are right there is no other option apart from coping. Think a call to the GP is on the cards. Lost it the other day with a driver on the commute to work. So close to hitting him, but feared if I started I wouldn’t stop. Need a healthier way to cope.

    Premier Icon althepal
    Full Member

    Sending some positive thoughts your way. Speak to your mrs, speak to your mates, speak to your GP, speak to us on here. Sounds like a horrid time for you all. You will get through it but you might not feel that way just now. Hang in there and if you’re struggling get some help.

    Premier Icon bradley
    Free Member

    An appointment with the GP should definitely be on the cards. I lost my temper too but at work…With my production director.

    Premier Icon gordimhor
    Full Member

    Fingers crossed for you op. Don’t be afraid to ask for help from your doc or friends and family. Best of luck

    Premier Icon user-removed
    Free Member

    Just for the record and to add to my post above, Mrs Removed ended up with some scary lumps after a few weeks of breastfeeding. Like sacks of tatties. Very common to get harmless cysts apparently.

    Premier Icon funkmasterp
    Full Member

    I lost my temper too but at work…With my production director.

    I hope you get to resolve whatever it is you are going through and that you and your partner can put it behind you. I’ve been close to losing it at work a few times. It genuinely scares me.

    I had a vile temper in my younger years and was quick to resort to violence. My partner was the driving force behind me turning my life around, calming down and putting the past to rest. I know its stupid and the result of no sleep and being sat here with a bottle of Bourbon, but it feels like this is punishment for my past.

    Didn’t think I would ever have a relationship, let alone a house, steady job and family. I just want to be the Father that mine wasn’t. Didn’t speak to my Dad for years, then my brother was killed in a road traffic incident, just crossing the road. Remember being sat in a room with a consultant, mum and sister in no fit state, my partner there for me as always. My Dad, who still hasn’t acknowledged the birth of his grandson, and I for the first time agree on something. To turn off the machines keeping my brother alive.

    This drink is turning me rather melancholy.

    Premier Icon kimbers
    Full Member

    put the bourbon back, down a pint of water and go to bed!!

    Premier Icon funkmasterp
    Full Member

    Apologies, it was foolish of me to post that and to be drinking. Too late to edit now though! Thanks Kimbers, think I will take your advice. Drinking alone (even the fine Makers Mark) and dredging up the past is never a good combination for keeping ones sanity intact.

    Premier Icon Pook
    Full Member

    I disagree. A healthy approach to alcohol is best. Sometimes I savour a fine single malt or pleasant rum once the noise of the day has passed. Being able to control it is the key.

    Premier Icon mamadirt
    Free Member

    Hey, take care of yourself, your partner and your lovely boy. Struggling to cope is something that far too many folks are feeling and a drop of alcohol, occasional loss of temper and melancholy thoughts about the past are all part of that coping. Find strength in the support of friends and family and please ask for help if you need it. Stay strong together.

    Premier Icon wordnumb
    Free Member

    Hey funkmasterp, sorry to read of your harsh situation. Any advice I might offer would come across as dismissive of the number of things you’re having to deal with. Stay strong, keep yourself healthy so you can provide support to your family. Hope things improve for you and yours.

    Premier Icon jamj1974
    Full Member

    Funkmasterp that’s a hell of a lot to deal with and I can only imagine how tough it is. I would only say that you need to remember that you need support and care too. Being there for your wife and son is taking it out of you so I hope you have a friend or family member who can give you some TLC too.

    Bradley, I hope things work out for you.

    Premier Icon wallop
    Full Member

    Try not to worry about the CF. Yes, it’s not an ideal situation but it can be managed well – my friend with CF is in her 40s and we love DHing together – her older brother also has CF and he is a superfit roadie.

    The outlook gets better all the time.

    Premier Icon murf
    Free Member

    Can’t add anything more constructive than the advice above but both my boys have severe reflux and milk protein intolerances. My wife needless to say is an expert on the subject so if you need any advice with that then I can pass on your details.

    Premier Icon core
    Free Member

    Don’t let the CF worry you too much, as above, it can be managed a lot better these days. A relative and good friend of mine is rapidly approaching 30 and is very active, he has a special massage bed & the occasional rough spell, but on the whole you wouldn’t know he has CFCF
    On the not coping/staring into space thing, I know what that’s like, the past fortnight has included a fair bit of it, and so will the next I think. I don’t necessarily think it’s a bad thing though, time to your self is good when you feel so low, I know how hard it is to talk to the people closest to you, when it’s supposed to be easy.

    I’d recommend talking to someone you’re not so close to, or a counsellor, it’s counter intuitive, but I find that much easier.

    Premier Icon molgrips
    Full Member

    I have nothing to offer re your son except my sympathy, but I bet your wife’s fine. Lumps are expected when breast feeding especially when you stop.

    Premier Icon unfitgeezer
    Free Member

    Hi

    Hope this offers something of help…

    Both times my wife was breast feeding and after stopping she had strange lumps, both times to a specialist and it was blocked milk glands…

    Thoughts are with you…

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