New here, just need to chat

Hello all,

Not sure if am posting in the right place, so apoligies in advance.

Hope all u don't mind me posting as am not the asthmatic, my daughter is, and she's not really a child she's (29 yrs) she is chronic brittle asthmatic and is all a whole load for meds including s/c 24/7.

I am just looking for other parents who may be in the same situation as me.

I am so worried about her, she doesn't seem to listen to people including doctors, nurses, consultants and me.

I know she no's how deal with things but she seems to push herself to the limits.

Last time she ended up being vented, she always says she is ok when u can clearly she that she's not.

I know shes not a child but i really do worry about her.

She used to post quite abit on this site, the few names i remember her telling me talking about , bex, kate and wheezer, she stopped posting a while ago. (maryh).

So really i think i just needed to get that off my chest to people who i know would understand. so hope u all don't mind.

Hope ur all well an tho's not well hope u feel better very soon.

Thanks or taking the time to read.

take care all

collette

10 Replies

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  • Hi Collette,

    My sympathy to you for what must be a horrible situation. This forum is for everyone who is affected in any way by asthma, whether they are the patient or not, so we will all try to support you if we can.

    I remember Maryh from when she used to post, although I didn't know her that well. I am 29 as well and have Type I brittle asthma, and have been ventilated on several occasions, so I can empathise with what Mary is going through. I can also imagine how difficult it must be for you - I have seen what my husband, my mum and the rest of the family go through when I am very unwell, and I know it is a great source of worry for them.

    I think it is really difficult when you see someone struggling and they say they are okay and don't need any help. There aren't any easy answers I don't think. I know that at times in the past I have not been particularly sensible about seeking help early, and have done things which I have known will put me at risk. On the other hand, I have to live my life, and try to live some sort of meaningful life, and that means not always putting my lungs at the top of the list when it comes to decision-making. It is an extremely difficult balance to strike, and I won't claim to have it nailed, even after 11 or 12 years of brittle asthma. I have made mistakes in the past, both in doing too much and not seeking help quickly enough, and, on other occasions, in protecting myself too much and not doing things because I have been scared of how my asthma will respond. I sometimes (well, often, actually) feel that I would do anything, accept any restriction, to avoid being ventilated again - and then on other occasions I will find myself pushing things to the limits again. I see my life as being a balance between what is best for me as a person and what is best for my lungs - and the two are often not the same.

    I imagine Mary is feeling quite frustrated and is trying to work out for herself where the limits are. It is a learning process, I think, however long you have had the condition, and unfortunately there is no totally safe way to learn it. There may also of course be an element of denial in her mind about how unwell she sometimes, which again is totally understandable and a normal response in that sort of situation. All you can do, I think, as a mother, is just to be there when she wants you to be - I appreciate it must be extremely difficult to see her taking risks with her health, but that may be how she feels she has to do things at the moment.

    I would guess that if she is anything like me, she probably also hates being 'fussed' over - and personally, I find that it is easy for me to interpret any enquiry into my health as 'fussing' when I am in the wrong mood. That emotionally loaded 'And how are *you* today?' over the phone in the sort of tone of voice that lets you know it's not just a casual enquiry; the look of worry and concern if I so much as cough or use my inhaler, let alone use a neb or O2; the calls from family members after an out-patients appointment, to ask 'how it went' when really nothing has changed - all of us with severe asthma have probably experienced some of these. I am not implying that you do any of these, but sometimes family love can be a little suffocating! I guess we all really just want to be treated as normally as possible really. I do appreciate it must be very difficult not to show concern when you see her struggling, and I am not sure what the answer is. I think what works best for me is a simple enquiry of 'how are you?' asked casually - which gives me the option of talking about it if I want to, but not if I don't want to. Your daughter might also want to feel that you consider her to be more than just a pair of lungs (again I am not saying you do have this attitude, just that sometimes it can feel to the patient like people feel that way!) - I would suggest, if you don't already, trying to involve her in things that she can do for you, whether that's cooking you a nice meal, if she's able to, helping you pick out clothes from a catalogue, choosing paint colours, arty crafty things, whatever. People like to feel useful and valued and people in their own right, and one of the difficult things about having a chronic severe illness as a young adult is the fact that it puts you in a position of unnatural dependence on your family at a time when you really feel that you should be branching out, being more independent, and even looking after your parents/grandparents yourself.

    Anyway, that is just a little of my experience of how my illness has affected my family and my relationship with them. I hope it is helpful - as I said, I am sure there are no easy answers, it must be a horrendous situation for all the family, and my thoughts are with you.

    I am sure that a few of the other parents of brittle asthmatics will be along in a bit to add some more useful things. My mum is just in the process of registering for the site, as she's just been diagnosed with mild asthma, so I'm sure she wouldn't mind you PMing her if you want to talk to someone else with a 29 year old daughter with brittle asthma (I imagine her screen name will be 'dragonlady' or something similar <rolls eyes>, if not I'll let you know).

    All the very best to you and to Maryh

    Em H

  • Hi Collette

    I am in a similar position to you, I am the mother of EmilyH who has already posted a long reply to you, I see. So this is just to endorse what she has said, there are no easy answers and it is awful to watch your child suffering even if she is an adult, I know exactly what you are going through.

    Dragonlady

  • Hello Collette, welcome. Hmm tough call here, you see I am fine one for pushing the limits although I do tend to listen to Drs (most of the time) .

    There is a very fine (you can't see it it is so fine) line between getting having some quality of life and putting yourself at risk. The secret is to hope you know when if you are putting yourself at risk to stop and ""do the right thing"". The problem is some swine keeps moving the damned line. If you have read ""Camping"" you will see a very long post by me (don't bother if you have not read it I tend to ramble) about football having a minor event at a match. Now I have been going to football with lungs in pretty much the same state of stroppiness for the past year and never had an attack I thought I was built proof once I got into the stadium then out of the blue someone moves the line and have to re-evaluate again... I was lucky the other night, there have been times when the new position of line means a quick to trip to ITU don't pass go and certainly do not collect £200 (more is the pity).

    I and most people who live with this are rebellious my nature, come on I have 4 teenage kids and sofa surfing used to be my least favourite hobby. I get all arsy when anyone says just sit down and let us do it for you. Rebelling means walking up to the line sticking your foot over it and hoping you can pull back before it gets too bad. In my case I rebel by overdoing it, I always take my meds (Ok all right I have on the odd occasion stopped the sub cut to check I still need it but that was in the interest of science not a rebellion). I can not imagine hte pain I put my family though and I am sorry but I am not going to stop living my life cos I actually think watching me decay and become a blob would be much much worse.

    Bex

  • Hi

    EM H, Dragonlady and Bex Thanx for ur replys.

    Dragonlady, sorry u have developed asthma, really hope it doesn't cause u too much trouble. i think we will have alot to chat about, good to know i am not alone, she thinks i shouldn't worry as much as i used to cos she's is not a child anymore she's 29, same age as EM H.

    Nice to know i am not over-reacting and that she is not the only one that doesn't always listen. she really is a worry. she does listen to doc, cons and nurses but she doen't alway do wot they advise (eg. we should admit u now) her reply is "" i will come back later if i don't improve !"" i know she and the rest of u asthmatics must be sick of the site of hospitals, but i just can't understand when they want to admit her she has to reply with i will come back later if i don't improve. she always has to do it her way, when even the end result (being admitted) is the same. i just wish someone could talk some sence into her, i worry that one day she may leave it too late, am begining to lose count for the number of times she has been in ITU and vented. I know she finds the limitations on her quility of life hard to accept, but wot i don't understand is that it has been something that she has lived with all her life, so it is not something that is new to her but yet she doesn't admit when she is finding it hard to manage. I know she really hate fuss and bother, even when it is for her own benefit. She has had far too many close calls for my liking. There are times when she insists she is alright, but yet i can see that she is frightened, she just won't admit it.

    Would be grateful for any advise on how i could get her to see things from my side.

    Anyway i think i have rambled on abit there. (sorry)

    Hope to chat to u all again soon.

    Take care

    collette

  • Hello

    Not a parent a patient.

    I too have brittle asthma and I too am always ""FINE"" when asked.Like a lot of us we just dont want the fuss and are always told you r always in hospital!

    I think I function best in a denial kind of way if i dont think about it its not there.

    Thats not to say im not always wheezy whether in or out of hospital and yes ive been vented BUT that was yesterday Past tence today is another day.

    If thats how she copes then it works for her.I live alone but get nagged from others and my daughter every day.

    Just go with the flow i feel its easier that way.

    Hope your not getting too stressed? look after yourself too

    Penny

  • Hi Collette,

    Sorry for the late reply, must have missed post when I was away.

    I have spoken to Mary a couple of times in the past. She can phone me anytime!

    Anyway, I am 30 something ish and been brittle for a long time.

    My Dad was the one who used to fuss way too much - Mum is a matter of fact person and just gets on with things when I am ill etc. (We lost Dad 6 years ago)

    Still, I like to be independent and I am occasionally stuborn with my health. I used to carry on regardless til I dropped years ago - bit better now - well most of the time! Though, I perhaps don't always realise how Mum is thinking ...

    Anyway, I hope the 'Mums' here have helped you to share perspectives!

    Take care

    Love

    Kate

    XXX

  • Thanks Kate

    Hi Kate,

    Hope ur doing alright.

    Thanks, think i remember mary mentioning u now u mention it, was when she was having probs with sites ? then she had a differant pump from the ward and u explained in a better and easier way than the cons how to draw it up etc etc.

    Also around the time her dad passed away.

    Mary not too good just now, came home friday after another 2 wk stay.

    She's really down as all her friends have just gone on hol (all girls) she was ment to be going too but her gp and cons didn't like the idea, she wasn't allowed to fly without a letter from them as she needed to board the plane with sharps, neb etc etc. I would have been a bag of nerves the whole time she was a way if she had of gone, but i do wish she would have been well enough to go she could do with the break. so u can imagin how disappointed and down hearted she is.

    Sorry for rambling.

    Hope all are well and those not hope u get better very soon.

    Take Care

    collette.

    xxx

  • Hi Collette,

    I am sorry to hear that Mary is feeling so down-hearted at the moment - please pass on my sadness that she's been so unwell. It is so hard to have to keep missing things - sometimes I feel like I am constantly saying no to my friends at the last minute and letting them down. Luckily I have a really good bunch of friends (for the most part) who don't let it put them off and keep asking me! I do worry that they will get fed up eventually, though.

    Do you think Mary's friends will agree to do a short break in this country, that she's more likely to be able to attend? Perhaps a weekend away in a nice hotel with a health spa or something, so that they can all have some pampering time and you can relax knowing that she's not gone off abroad anywhere. Even if it's just a day trip, it might help cheer her up - we all need pampering time from time to time! Or perhaps they would enjoy something like quad biking more, if she's not into girly stuff and she has enough energy for it.

    If I could, I would volunteer to go along as her personal physician, but I think I might be more of a hindrance than a help - I can just imagine us causing chaos by both going off at the same time.

    Take care anyway, and I do hope Mary feels a little better soon

    Em H

  • Thanks EM

    Hi EM,

    Thanks for replying, will pass on message to mary and will look into the info and see wot mary thinks.

    She does have a few really good friends that do understand, they have all seen wot she has been through, but like u she worries that they are going to get fed up of her letting them down all the time last minute. Even tho she wasn't well enough to go on this holiday with them, if she could have boarded the plane without needing letter from cons she would have gone. And i would have worried myself sick and i know her friends would have been a bag of nerves.

    I have suggested going away somewhere in this country of a short break (with me) tho i can understand her not wanting to go away with me, she says i fuss too much. I will speak to her about a pampering weekend with friends and see wot she thinks. Then if she does want to go ahead she can speak to her friends then when the return from hols.

    Thanks again em.

    Take Care

    collette

    xxx

  • Hi

    Hope everyone is doing alright and those who aren't feel better very soon.

    Just looking for someone to chat to really.

    Mary is really struggling 2day, tho she keeps saying she is "" fine "" and she can cope.

    I can clearly see she's not. I feel so flustrated an useless. I just wish i could do something to take away her suffering or at less help in some way.

    Sorry to moan, guess all parents feel the same when there watching their child suffering.

    Sorry i just needed to get that off my chest. Hope u all don't mind.

    Take Care

    collette

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