In the last 6 weeks both my daughters have been nebbed in hospital.
My eldest is on 3 inhalers and Montelukast.Shes just finished pred.
My youngest daughter is on steroid nebs twice daily, 2 inhalers, Montelukast, anti hists, Omeprazole and Gaviscon. And now shes on additional Pred and Antibs!
I dont feel like a mummy at the mo, I feel like a nurse. All I do is seem to nurse them, medicate them, get up to the night and try and stop them vommitting through coughing, have to stop the car on the side of the road and give emergency puffs. All this is daily. Not a day off! Everything we do, we have Asthma hanging over us like a dark cloud.
Im shattered. Little sleep and then the additional load through the day is taking its toll. I feel like i cant enjoy being a parent and doing normal things with them. My youngest is struggling to walk far at the moment.
We came back froma trip abroad a fortnight ago. While away, neither had any symptoms whatsoever. i really felt like we got respite. Then we came home and bam! full on Asthma for them both!
Im sat here in tears as I am sad for what things are like. Ive got a teenage son too.
Just feel ive got nothing of me to give anymore.
Does anyone else feel like this? I would do anything for my girls to be healthy and for us to experience the weightlessness we did while abroad, on a long term basis.
How do you all cope with the horrid condition we all are affected by?
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Sorry to heat you and your girls are having such rough time- out of interest where did you go away - what were the living conditions/weather like?
Might be worth having a good look around the house(i apologise if you have already done this) - we have got rid of all carpets bar on the stairs,allergy bedding on all beds , damp dust every day, use non chemical cleaners(ecover products or old fashioned cleaners) no pets,perfumes, smoking etc in house.
Do you family locally that can cope with your daughters ?- if so how about asking them to take the load off you even just for a morning once a week so u can have some 'me time' to relax (not do housework etc!!!)
Have your girls been referred to a peads dr if not i would certainly push for 1 or even to a specialist center -its not fair on any of you to carry on like that.
If you need to chat pls feel free to pm me -
ps im a brittle asthmatic and mum to an asthmatic daughter and a son whith chronic skin conditions
My youngest is under two paeds, one being a respiratory specialist. My elder daughter has just been referred.
My youngest is classed as Brittle, according to the hospital. She has had lots of investigations, including Bronchoscopy and CT scan. Also allergy tests and they have come back negative. Her diagnosis is Aspiration as her oesophagus apparently goes into spasm when she is short of breath thus causing to aspirate which is a vicious circle as this the causes repeated infections!!
We have no close relatives. Mine are 180 miles away. Its just a case of getting used to it I guess. But sometimes, due to repeated lack of sleep during a bad period, it feels alot tougher!
I dont use any aerosols, wet dust daily etc. Both girls apparently arent allergic to housemites or dust however Im ultra picky about the hygiene and cleanliness. I asked our community resp nurse if she thought there was anything causing it in our home and she said no.
We went away to the Canaries. The air was clean and fresh and wonderful. We live rurally in Cornwall. We have a acre of land that is surrounded by trees and overgrowth. I think the main cause is we live in a dip and the aire doesnt seem to move about. We often get low mist sitting in our garden,. Beautiful to see but not so great for the ole lungs! We have had our house on the market for 3 years now in the hope to move to the coast and on a hill!!!!
I probably sound on such a downer. Im not usually, I am known as very upbeat and 'coping well'. Sometimes though, the facade cracks and the reality sets in!
Emily, I know exactly what u mean about a dark cloud hanging over you. Everything revolves around my son when he's ill, I am like a nurse in and out of his room with meds, anything to tempt him to eat, doctors, constant monitoring, up in the night of course.. He misses a lot of school and gets down. He seems to have these episodes every 4/5 weeks, triggered by a cold.
I should say that everything revolves round him when he's 'well' too. I'm told I fuss him too much but I live in dread of him being ill. I'm always checking up on him, eg warm enough, got his inhaler, got his phone on him in case he needs to call, peak flow etc etc. Doesnt help that he's not very well organised!
Like you we live in the countryside, all the pollen probably makes things worse. One of our GPs told us this is a bad area for asthma and we should move! And like you my family doesnt live nearby, my mum is getting on now herself and 120 miles away, and my siblings dont live nearby and dont understand anyway. Having said that, my mum came for 2 weeks at Christmas and she helped look after our son whilst we went to a funeral(!). He was very poorly for 10 days and she made him drinks, sat with him etc and was very supportive.
I dont know what the answer is Emily, just keep going I suppose. Does your husband help much? Mine is lovely but at work all the time. Sorry for long rambly post. xx
Hi Emily
Hugs to you, Its very tough I know, when you have more than one child with medical problems. I have two myself, who are 18 and 14 now, and have had medical problems since birth. Some days I just wanted to scream and stay in bed with the duvet covering me for comfort. but of cause that never happened lol. Always had to be up and down most nights seeing to the kids for one problem or the other.
Or in hospital with one of them. Its wretched when your watching your children struggling to breathe. And unable to help, apart from giving them the usual meds, we are helpless really , have to put our trust in various docs and nurses and have to go over this time and time again. just horrible horrible. Many a time I would go to the bedroom and bite on my pillow until I felt calmer. (crazy I know but works for me lol).
I sometimes wonder how me and hubby are still together after 21 years because we have been through hell and back with the kids, so stressed out at times, but we manage. Somewhere deep down you find the strength and carry on. (thank god for pillows) lol.
I think over the years you harden up inside, I don't know whether that's a good or bad thing but it happens. You carry on in the best way you can for your family, its hard but essential.
hope this helps a bit, and hope things get better for you and your family soon.
Take care
Shelly
hello. It sounds like you are having such a rubbish time. Dont worry about being gloomy. sleep deprivation is enough to tip anyone over the edge.
My little chap is mildly wheezy with a touch of eczema and a few issues with food allergies. He also has excess flyid on the right side of his brain it is totally just there and not causing any issues but i worry endlessly that one day it will. He is a very healthy little boy but I constantly feel like I am a carer not a mummy. He has had several febrile convulsions too so I am paranoid every time he has a temperature. To the point that at 17mnths he can take his own!!
I dont have hald the issues you have so I am astounded at your strengh, that comes from being a fabulous mummy so you should be proud of yourself. Little man has not slept through for three mnths because of that horrid nite cough and I sympathize with the desire to hide under the duvet. You are not alone. However I certainly think you are a greatummy and your girls are very lucky to have you. Hope things settle soon. chell.xx
Emily, I am so sorry you are feeling so tired and low at the moment. Don't be hard on yourself, having one child with Asthma is bad enough let alone two You are doing really well and doing the best for your family.I know with me I feel worse about things when I have had no sleep, is there anyway your partner could take over for one night so you get some rest?
Angievere - my husband sounds like yours, working long hours mon-fri and home after the girls are in bed each night. He's v supportive through the night though thankfully.
It was lovely you has your mum there at Christmas to see what you face and help you. Our life revolves around Maddie too and affects the other two tremendously despite us trying our v best to keep things normal for them.
Shelly - love your advice re pillows! Will deffo try that one!! Brill!! I usually try and walk to the end of our drive and back! But pillows sound better!!
Agree that you sound like a great mum Emily. It must be very tough having 2 children with asthma, I just have the one. Part of my problem is that as a life long asthmatic I can totally sympathise with and relate to my son. I had a pretty awful childhood and not had an easy time of it with work and other issues as an adult. So I probably project my own anxiety onto him. Have to say that the meds have improved so much since I was a child, I'm very grateful for that. And the medical support we've had (on the whole) has been good. As mums we just have to keep chipping away, it is wearing but what else can do. Thinking of you Emily, pm me anytime. xx
Vixster - thanks so much. My husband and I do the nights together as it's scary dealing with it alone. He's a total rock when it comes to asthma. Thanks so much for your words.
I have no idea how hard it must be to have children with such symptoms as your's Emily. Through all of your posts you do seem like an absolute rock for them and such an amazing advocate. You are obviously in exactly the right place for a wobble/vent/offload with so many other supportive and strong people. Hope you manage to get your move to the coast, doe sit help them being on the coast? Lots of loving support Nicola x
I am so sorry to hear you are feeling so down, I am not surprised you are feeling like this bless you.
You are an amazing mum and ALL three of your children are lucky to have such a wonderful mum.
No doubt you will find that inner strength and carry on as I am sure you have many times before.
I hope you have found a comfortable pillow and that's were you are laying now!
Thinking of you lots.
Clare x
Hang on in there Emily. You sound like a totally awesome mum. I know how frightened my parents get when they see me really struggling. Glad you had a nice holiday - I never seem to have any problems when I go abroad, I only need my preventer as usual. We are all here if you want to vent and it sounds like your husband is a great support. Hope your girls feel better soon. Olivia xxx
I know how you feel!!
So sorry you are having a hard time just now.
I have just looked at this website for the first time after wrestling my 3 year old to the ground to pour a sachet of montekulast down his throat which he then threw up all over the couch and I also feel at my wits end about it!!!
My ten year old was bad with athsma as a baby but didn't bother too much about taking the medicine. However my 3 year old is a living nightmare. He has been on medication for athsma, ear/throat/chest infections since he was 8 months old and as a result he has a total fear of medicine of any shape or form. This means every single day in life it takes both me and my husband to wrestle him to to the floor and administer it because if we don't he will be up all night being sick. It is a real strain and causes arguments between us as we get so upset about it cos we feel like we are hurting him and the poor wee soul doesn't really understand it is for his own good. I know how you feel when you say you feel more like a nurse than a parent. I think this is the hidden side of athsma many people don't see or understand unless they have been in the situation. I don't think their is enough support at all.
You asked how we all cope, I think I (TRY!) and cope by taking one day at a time and remembering that hopefully it will get better with age. Also I think the effects of athsma are under rated and I think it's ok to feel worn out and sad at times cos parents are human too and what we are dealing with is bloody hard!! Hang on in there you sound like you are dealing with sooo much right now and doing a Fab job at it too. Your post made me not feel so alone so thankyou x
Thank you all for your warm and comforting words. They are such comfort and a huge support.
Nickynoo, yes, getting away from our immediate countryside surroundings and being by the coast always helps my eldest. My youngest however often gets out of breath playing so needs lots of puffs. Yesterday she was sick on the beach through coughing!
Clare, thanks so much for your support and texts. Not tried the pillow thing yet but a wander round the garden with a large glass of wine often does the trick!!
Gb girl, I agree there's something relieving about being abroad for asthmatics.
Luisa, sorry to hear you're going through a hard time. As regards to the montelukast, have you tried mixing it with yogurt? Maddie was always sick when we put the granules in her mouth yet in yogurt is fine. Hope things improve. It can be such a strain, compounded by lack of sleep. Take care.
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