Am new to the group, however, have been suffering from asthma since I was 16, however, the last 4yrs it has been uncontrollable, I'm on long term steroids, allergic to an antihistamine, have had 2 biological injections and seem to be allergic to that, have just got out of hospital after spending all day in resus yesterday. It seems that my asthma attacks are mainly due to allergies, had the skin prick test and am allergic to everything bar cats, blood test was over 1157 for the allergy thing. However atm I am regularly ending up in hospital, I'm looking like a pin cushion, I also have kidney stones and regularly suffering with infections, am feeling very defeated and low in mood, not seeing a way out of it all, I'm a single parent with 4 kids at home that all rely on me. My asthma nurse and consultant are great but we are all struggling for answers and for a way forward.
Sorry for a very jumbled rant, nowhere to turn to as no one else that I know, suffers with this
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Mummynuthouse
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Oh my that sounds awful, sorry to hear that you are so extremely unwell. I can totally understand your situation I would be frustrated as well to be constantly in hospital. Special with this ongoing situation.But try to stay a bit positive and have some happy thoughts, or watch something funny to get your mood up a bit. I also have my bad days that I have to pull myself up again, it's not easy, but it helps. Music gets me up again, special 70-80s songs I love to let your mind soar again, to remember something nice. This helps me a lot and it will also help your health to think positive again.
Or watch pink panther with Peter Sellers' to have something to laugh about. I don't know if it is helpful LOL just trying to lighten your mood,
Two men meet on opposite sides of a river. One shouts to the other, "I need you to help me get to the other side!" The other guy replies, "You're on the other side!" 😃😁
You take care and don't give up, they come good times again. Stay safe and warm 🍀🍀🍀
Hi there, you certainly are carrying more than your fair share of health problems! Bless you. One issue can impact on another, it all snowballs, and can often overwhelm one's coping mechanism. Add in a pandemic, an NHS which will take a while to readjust to treating things OTHER than Covid19 and we are all floundering around a bit! I have found my local 'Mind' helpline to be a fantastic support when things go totally yucky. Sending you all best wishes, you are not alone. Xxxx
I hope you have a cat - they can be very comforting ... although if you don't, I wouldn't recommend getting one right now! The first thing to do is get some extra help in the house so you have one thing less to worry about. Worrying about the house and kids is going to make you feel worse, and it sounds as if you need a good mental and physical rest. Do you have family who can help? Ask the GP or nurse if there is any help available, for someone as poorly as you are, if not.
I can't give you any medical advice, except to keep seeing the consultant but if you have no faith in him/her, ask to see a different one. Hang in there - I'm sure it will get better at some point.
I’m really sorry to hear that you’re struggling. Hopefully things will calm down soon for you and hopefully you have a good support network
Just an idea (as I have a friend who seems to be similar) has your con looked into your IgG levels (as you say you keep getting infections) and is there any possibility that you have something along the lines of MCAS (mast cell activation syndrome). It’s something that docs can forget exists, but the allergy presentation that you’ve said sounds similar to how things started with my friend. Hopefully it’s not anything you need to be worried about, but if people are struggling for answers and plans and they haven’t thought of them, it might help 😅
Hope you feel better soon. Be kind to yourself and try and give yourself time to recover from the latest.
Hi Mummynuthouse, I am sorry to hear you are struggling with your health ATM. You mention you are under a consultant for your asthma is this secondary or tertiary care - do you know? Please feel free to call our helpline and have a chat with one of us 0300 2225800 M-F 930-445. Also you may find AllergyUK a helpful resource too (they have a helpline) allergyuk.org/
Thank you for your responses, 4yrs ago I ended up in high care, then became a regular at the respiratory care team, my feno is 196, no one has really sat down and explained anything to me, I guess I try and take it in my stride.My attacks seem to be getting worse, (got to love the change of seasons) my kids are fantastic, my 5yr old helps with my nebs every morning, then gives me my pf to do, he will then run to my 15yr old and show her, most of the time it's low enough to warrant going on a weeks worth of steroids, more frequently though it's required a trip to the hospital, my depression is getting the better of me at the moment and the last thing I want to do is end up back in hospital.
No one seems to be giving me answers, my biological injection, they have stopped and starting a new on mid April, because I'm allergic to the additives, or so they say, but are not willing to do further tests to see what else I'm allergic too.
I was meant to have my covid jab last Friday, I spent 20mins sat outside panicking, not knowing if I could have a reaction to that, so I chickened out.
There is more to that, as when I came out of hospital last time, my kids asked what would happen to them if one time I don't come out, that in itself tore me apart.
I'm confused, no one is willing to take responsibility and say yes I will be fine having the jab, I know realistically that no one can give me that answer, but it is playing with my life, do I take that chance?
My respiratory team are great, they are always there for me, but nothing has been explained to me, I don't know what is going on, I have these attacks frequently and with each one it is getting worse, my lungs seem to be taking longer to recover, and trying to deal with that alone, whilst dealing with the kids and daily life is taking it's toll. Mentally I am drained, physically I'm drained. Again I don't have friends that even have mild asthma, so the few people I know, do not understand what I am going through.
Life is like a box of chocolates, which for me is filled with all coconut.. Life is crap, it's ruled by tablets, inhalers, nebs and lots of hospital trips.
Sorry to hear you're having such a rough time - it sounds awful.
Hard as it is when you're struggling (even a one-off, never mind constantly like you are), I think you need to make a point of asking the direct questions - what does this mean? Why are you stopping/starting this? When will x happen and what impact should I be seeing? What options are there for....(thinking short term stuff here rather than their hopes for the future because when you're where you are you want something to help now or soon, even of it's only a management technique not a cure).
I know from experience that this can be difficult during an admission as although hopefully you see them, it never feels the right time. But it is important and sometimes (well all the time) they just assume people know. Often why would we but, even when it is perhaps more obvious, dealing with things is harder when you're not well.
Another option would be to phone or email them if you have contact details. Or write to them. Say what you've said here. I think they can focus on the here and now and the medical and don't realise quite what an impact it has generally.
Can you also speak to your GP or a practice nurse? I think they need to know that you're struggling mentally - going through half of what you are would easily do that I think.
In the meantime, can you find something nice to do for you every day? Even if it's a 5 minute sit somewhere on your own with a cuppa or a book or something. Something that is not "crappy health" related. Or a hug with your children maybe. Not saying you don't do that but an extra one!
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