Am I being selfish?

[RD23]

After being in and out of A&E with my asthma for the best part of a month it’s safe to say that I’m feeling frustrated and drained.

I really don’t feel like I’m getting the support I need at home at the moment. My boyfriend told me last night that nobody has stopped to ask him recently how my asthma is impacting him and how stressful he’s finding it, my mum has also told me she agreed and that she doesn’t think I appreciate the impact it has on those around me even though the impact on me is greater.

I have always been aware of how my asthma affects those around me as I’ve been told fetching me from A&E is a pain, ‘I’d got x,y and z to do today, coming with you to A&E was the last thing I needed’ ‘Between looking after you and your Nan, we don’t get to enjoy our retirement’ these comments really affect me to the point where I’ve apologised to people in the past for the inconvenience and they’ve told me not to be daft as I have nothing to apologise for.

With how bad I’ve been recently, I’ve had to stop thinking of everyone else and just focus on me, I’m in self-preservation mode. I’m now really struggling with the emotional/mental impact of my attacks as I honestly feel like I’m on my own, to the point where if I’m bad again I will text for an ambulance as I have this set up on my phone and I’ll ask a friend to get me from A&E or will take a taxi as I really feel like I just don’t want to bother anyone with it.

I also have pred head, but I’d prefer that and being able to breath than the alternative.

It’s so hard when you’ve been so bad to not get caught up in it all but I honestly don’t think those around me appreciate just how much it’s knocked the wind out of my sails.

[Lysistrata Administrator Community Ambassador]

that's really hard. Yes, I totally get that asthma can be hard on those around you but they really seem not to understand that you're the hardest hit and overall we all tend to feel guilty as it is even without those comments! Even if they do have a legitimate feeling about the impact on them, and not doubting that, you're really the last person they should be offloading that onto - that's not fair at all especially when still struggling. Do they not think that YOU might have things you wanted to do and you don't go to A&E for laughs?

I don't have much to offer but I do understand what you mean - it's so draining and disruptive and sometimes you just don't have the energy! I hope this helps to make you feel less 'selfish' which I don't think you are at all though I know those comments may make you feel like that.

Happy to chat on PM if you need to offload. I had a trip last night and my brain is semi-slush even without pred so totally get the pred-head - I think part of it is asthma head too as I get like that even though I don't have pred much due to not responding to it!

[RD23 in reply to Lysistrata]

Thank you 😊

I do feel guilty about it all the time as I can appreciate that it must be a scary thing to witness. If they do have concerns, well there’s a time and place to air them, and this isn’t it! You can pretty much guarantee a reaction from me at the best of times but at the moment it’s like taking food off a grizzly bear and then poking said bear with a stick!

I have said to them before that a trip to A&E is never top on my to do list! I also got grilled the other day as to what set it off 🙄

I’m trying to work from home today but just can’t get my head in the right place. Pred head is a nightmare but it’s better than the withdrawal symptoms I was experiencing and my chest actually feels clear for the first time in ages!

Sorry to hear that you’ve been bad too, did they let you go or are you still in hospital? Hope you’re on the mend soon xxx

[Lysistrata Administrator Community Ambassador in reply to RD23]

Yep definitely a time and a place and a way to say it! Otherwise it just comes across as them being selfish, if I'm honest - yes it does affect them but not to the extent that they should prioritise that over how you feel.

I hate the 'so what happened/what set it off?' I've had family suggest anything I do while not 100% is selfish because it might result in another trip and it stressed them...thanks for that. Again I get the stress but I had a masters to finish at the time and kind of had to! Even well meaning questions about 'what was the trigger?' can be stressful if too persistent -I think people struggle to understand we often don't know or that it can be a mix. If I don't know I always blame the weather lol. British asthmatic but usually a fair bet.

I know the feeling re trying to WFH and head not in the right place...I did that last time and I should have had another day off tbh as I felt shocking despite doing very little physically, but I felt bad even though work are amazing! I always feel like I pile work on others but they are very nice and understanding.

Glad your chest is better - the pred withdrawal/low cortisol I find makes me very very fuzzy and slow. At least the GP you saw was good for that though sounds like a nightmare otherwise. I too have GPs I avoid at my surgery if I can and hope not to get them as duty dr.

Thanks! I went to my local (see bingo post lol) who are a bit dopey atm and they like to do an express service of allll the drugs (nebs mag hydro) then home. I don't mind if I can walk ok after that lot (sometimes I still struggle even after mag and then I suspect they would send me home anyway - I just got lucky the last couple of times). The annoying dr was there gahhh but thankfully not until after my mag had gone in; the earlier one was better. I suspect another hospital would have kept me tbh though my own bed is always a plus! I might try the other 'local' just a bit further - used to have a cons there so went every time a few years back and they were about 50/50 good and not so good. I could go where I have clinic, it is doable but I was feeling lazy and also wanted to avoid my cons and certain medics.

[RD23]

I was always taught to pick the time to express my thoughts!

Yep! I got the, ‘were you anxious about going back to work?’ Well no, but now I know that you think I am, that doesn’t help! I find with me it’s very rarely one trigger, it’s a combination of things.

I just hate to feel like I’m letting people down especially as work are so good to me.

I’ll have a look at the bingo post. Yes, being back in your own bed is always a bonus but it’s a horrible feeling to feel like they’re rushing you out when you’re not really better. How are you feeling now?

[Lysistrata Administrator Community Ambassador in reply to RD23]

Same with my work! I'm hoping the flexibility of freelancing will make that a bit easier but then is all on me.

Yep I don't mind *too* much this time and last time because I felt I was better than other times after that treatment ie could walk and talk ok and get myself home. It's worse when I get chucked out anyway or I think they want to - I do feel like if I had been struggling to walk I would have been kicked out anyway because the annoying dr just cared about sats dropping.

tbh I think the hosp where my clinic is has a much better A&E but their medics can be hit an miss and often think they know it all! I also find my cons isn't the best tbh on that either. I have let my asthma nurses know because the local didn't bother to give me any pred instructions - I think they just read 'often doesn't help' but I do need some actual discussion...even if I end up not taking pred! Like the nurse just came to take the fluids down and cannula out and then said you can go home...err great, clearly I'm classed as a frequent flyer then as you don't think I need any kind of discussion on what next, not even 'take this pred' or 'we don't think you need pred this time' or 'tell your team' lol.

Not feeling too bad but not been out yet, aha. Bit achy in the chest though my new wedge pillow seems to really cut down on the overnight chest aches. Really tired - last time it took me ages to get over it and I felt silly because it was just one trip not loads in a week like you had, and wasn't an admission, but then the day after that oneI had to go to an endocrinology appt and pick up my work laptop, and got attacked by smoke from a bus on the way which didn't help! (I had to break off the appt to have nebs. I feel like the endo nurse was *very* glad I had the nebs so she didn't have to sort me out as I was v SOB.) She even wrote it in my letter along with the A&E trip details and did a much better job of clearly stating the problem, treatment and outcome than most of my asthma letters and discharges! Hoping this time is easier as I don't have to go out too much.

Sorry for the ramble oopps...

[RD23]

They should tell you exactly what they’re doing and why, even if you know the score. I’ve complained before when they came to wheel me off for a chest x ray that nobody had actually told me I was having one, it’s a basic lack of care, communication and manners. I can appreciate that the NHS are stretched and doctors and nurses have a lot to do, but help yourself and make your life a bit easier by keeping your patients informed!

You know your body and condition best and the knock on effects it has and if you don’t feel safe/able to get yourself home then they should help you. Would they do the same to someone classed as a vulnerable adult or a little old lady? I think not! I’m always amazed at how differently I get treated because I’m young, some staff only seem to reserve sympathy for the elderly.

Have you contacted your local Healthwatch at all? I used to work for them and we gathered patient experiences, good and bad from local health and social care services and then worked with providers and the local Clinical Commissioning Groups to improve them.

[Lysistrata Administrator Community Ambassador in reply to RD23]

Yeah I hate it when they don't tell me....like yest they gave the hydro and didn't even tell me they were doing it! Come on, what if it had been a mistaken order for something I was allergic to? Or just in general, you're there and doing it anyway, you can take 5 secs to tell me what it is you're doing.

I've also had the being taken off without being told for a test and/or being referred to medics without being told (I overheard on the phone). I don't mind being referred but again I do think it's a bit rude to not even take a moment to stick your head round a curtain or ask a nurse to say this is what's up or this is the plan.

Also had drs relaying 'orders' via nurses without giving me any chance to object to them eg 'you're going home' after being told they would listen to me and discuss it. When I objected they said they would give me time to see how I was doing, then came round and made it clear they wanted me out and they were going to show me why. I was massively unimpressed and tbh I think the nurses were too.

I didn't even know Healthwatch existed! My local hosp does ring the day after to ask about your experience and I do tell them - got more mouthy since last year lol when I was too nice about the whole thing - I had meant to tell them that it was not really acceptable to send me home with a hospital prescription for antibiotics when they knew the hospital pharmacy is closed all weekend and I would have to go around various places while ill hoping it can be converted into a normal one - I'm not expecting them to do all the legwork but they should have considered that when doing the prescription surely as it must happen a lot. Might see about Healthwatch - I do want to praise the good stuff too

[Js706 in reply to Lysistrata]

My biggest bug bear with medical treatment (for anything, not just asthma) is lack of communication and updates! It just makes everything so much more stressful and confusing

[emmasue]

I know how you feel. When I was admitted last week, my husband (we are separated) asked when they were chucking me out because he needed me home to look after the kids. I don't think the nurse was too pleased. I think part of the reason they kept me in so long is they knew I wouldn't get any rest or support at home. I really just have my husband, who doesn't live with me anymore, my two kids (13 + 11) and friends. I feel bad because I've had to ask my neighbour to look after the kids so often the past few weeks so I could go to hospital. My husband struggles with the kids normally, but he was dropped into it last week. I think once he realised how ill I was, he calmed down a bit and just got on with things, but at the beginning, he thought I was putting it on. It's frustrating because I don't want to be ill. I felt terrible because I was missing out on an important milestone in my daughter's life (starting senior school) because I was in hospital. Fortunately, I am home now, but I still get friends who complain that I am sick all the time. It's not fun.

[RD23 in reply to emmasue]

😱 oh my days! I can’t actually believe he said that to you! I’m not surprised the nurse wasn’t pleased! Thankfully it sounds like he’s now come round and realises just how poorly you’ve been.

Aww, I’m sure your daughter understands but I can imagine how you feel, try not to be too hard on yourself though.

It’s tough when people don’t understand, luckily I have some very understanding friends who are used to it and if they’ve got a cold they will cancel on me so they don’t give me anything because of my chest. Swings and roundabouts!

[emmasue in reply to RD23]

Yes, my family are quite supportive, but unfortunately they live in America! We are trying to get my mum over for a week or so to help out. It would be nice. We have to hold close those who build us up. It's hard when there aren't many of them. x

[hilary39]

The last thing you need on top of feeling horrid (and scared probably, sounds like these have been bad attacks) is to feel guilty and anxious that you are an inconvenience and not acknowledging it enough!! I’m so sorry that that’s how the people around you have been feeling and are making you feel. This is a good place to vent about it.

Your loved ones probably hate seeing you suffer and are worried about your illness and that is manifesting as nagging. It is difficult to see a chronically ill person in your life be sick and to feel helpless but you did nothing wrong, you didn’t choose this, and you are (I’m assuming) actively caring for yourself by pursuing and taking every possible treatment and doing your best to avoid your triggers.

When you are feeling better, can you have conversations with your family and boyfriend about their expectations and how you feel? I’m sure you are a wonderful partner, friend, and family member who would drop anything to help your loved ones and understand that this is a two-way street.

But again I wouldn’t worry about any of that now! Just focus on resting and healing! Take care

[RD23 in reply to hilary39]

Thank you 😊

I think they’re finding it difficult as I usually bounce back with a ‘this isn’t going to beat me’ attitude but recently I’ve found it hard to do that.

I will try and chat to them when I’m better as I’m sure it’s scary for them (I get stridor) but I need them to understand there’s only so much I can do. I never miss a dose of my meds, I’ve been on inhalers since I was 3 and I’m now 33 so they’re part of my routine, I try where possible to avoid my triggers, I do everything I’m meant to but asthma is unpredictable.

Thank you for replying, it’s made me feel a lot better about it all xxx

[hilary39]

It's hard when you're in the throes of a bad flare and can't get full breaths and are so uncomfortable--I was thinking the other day that we breathe around 14,000 times a day and if we sleep through about 5,000 of those breaths, we are still awake and painfully aware for about 9,000 of those breaths when we're in a flare. It's pretty freaking miserable not to mention the fear and anxiety swirling in your head--will this attack get worse? Am I getting worse generally as I'm aging? What does this mean for the future? And so on.

To have to comfort your loved ones in the midst of all that feels absurd. I often find I'm having to reassure everyone that I'm ok (even if I'm not) while explaining my medical regimen and answering a million questions even when I'm so pooped I'd just rather be in bed distracting myself with tv until I ride out the flare.

I am still recovering from a particularly bad one and the prednisone made me pretty emotional this time around (I was on 50 mg for five days then tapered). I cried so much and really felt very bereft about the future. I feel much more sane and calm now but it's hard to ALSO have that additional layer of being emotionally out of whack during a bad attack (my endicronlogist explained to me yesterday how the adrenal glands modulate hormones and that big bursts of cortisol create big bursts of hormones --> emotions).

Glad you're feeling a bit better. These message boards are so helpful for us to vent to other people who truly get it!!

[RD23 in reply to hilary39]

Thank you. How are you feeling now? You’ve all been brilliant replying to me and letting me vent, it’s helped more than you could possibly imagine!

I went back to work yesterday and although I probably wasn’t the most productive, it helped me to feel like I was getting some normality back. Feeling more like myself today so thank you 😊

[EmmaF91 Community Ambassador]

Sorry. Bit late to the party! I’m really sorry you’ve been through this... asthma is hard enough without people guilt tripping you! Not much to add but been thinking of you and hope you’re feeling a little better (minus the pred head and all that jazz) xxx

[RD23 in reply to EmmaF91]

Thank you. I’ve tried speaking to them about it and they still can’t see how insensitive it is. They maintain that whilst they agree it has the biggest impact on me, they’re not sure I consider how it impacts them. I have pointed out that I do, I just have to zone out and focus on me when I’m bad but I think this is one I’ll just never win! It says far more about them and they’re attitude than it does about me.

Feeling more like myself again now, I went back into work on Friday and feeling that touch of normality helped. I also went for some reflexology yesterday and feel so chilled! My chest feels like I can actually properly breathe, a feeling we don’t get very often, and I can’t feel the aches in my ribs! I don’t know how it works but I feel great!

[Anniecath]

This is hard. Its difficult to try to explain to nearest and dearest that when struggling to breathe ALL your attention is fixated on your next breath. Everything else becomes unimportant. It is survival mode. I can't think of a way round it except to leave some "educational" leaflets on asthma lying around for them to trip up over. My mother used to say that it made me hard. I couldn't argue with her. It puts a lot of trivia into perspective. Maybe try and explain to them how frightening it is not to be able to draw breath. Walk and talk them through what you are going through, and add that you never know when its going to happen. I wish you success in getting through to them.