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New asthmatic feeling fed up and unsupported

As30
As30
10 Replies

Hi there,

First time posting and don't really know where to start.

Was diagnosed with asthma in the spring/summer this year after never suffering with my chest before. Originally they thought it was seasonal as also had a bad bout of hayfever (never had this before either). Had quite a few weeks of work as struggled to get symptoms under control. Different inhalers and numerous courses of steroids I had a fairly stable September and October.

Once the damp/cold weather started I had another flare up. I currently take fostair 200, spiriva respimat, montelukast and Salbutamol when needed. I also use a spacer. As there is nothing more they can do to manage it in the community they have done an urgent referral to respiratory consultant and my appointment is for July next year! I have been added onto cancellation list and there is no where close by that can do anything sooner.

I am currently off sick again and have been for the last 6 weeks. I've had a chest infection so had antibiotics and steroids for that. I stupidly went back to work before I was fully better and ended up being signed off again. So now have had 2 lots of sickness instead of 1. My colleagues have been great although we work shifts so me being off does put pressure on them as we are a small team. My line manager can no longer hide her disappointment in her voice when speaking to me and I have asked for a referral to occupational health which she has done.

I started another course of steroids on Monday (under GPs instruction) as very wheezy, tight chested, SOB - you know the drill. This is 4th lot of steroids in 2 months. Anyway last night I had to go to A&E for the first time as I couldn't breathe ( very frightening so hats off to you all who have lived with this for years!). Very positive experience seen quickly, nebulized, chest x-ray and bloods. My x-ray showed infection but luckily bloods weren't too bad and the nebulizer had improved things a lot so didn't have to stay in yipee! Have been back to GP who has signed me off until after new year - you can imagine how happy my line manager was about this. Which I get I have just caused a massive headache for them to try and cover all my shifts (wasn't at work on Xmas day though so that's something).

I feel like a stuck record of telling people the same thing. My husband is really good and does so much but is not the most sympathetic (actually dropped me of at A&E and left me there until his mum told him off and came to watch the kids). I have had to ask for help with things when it's been bad but have continued to do the school run even when very symptomatic and feel as they help hasn't been offered I don't want to ask. I've carried on as normal minus being at work, sorted Christmas, organised all the kids school things going onnthos month, continued to do the housework and washing etc as best I can.

Just having a bit of an oh woe is me moment and feeling sorry for myself. Didn't know if anyone has any words of wisdom for helping friends and family understand a bit better without sounding like I'm moaning (Which I know is ironic as that's exactly what I'm doing now).

If you got this far well done, thanks for reading and sorry for the massive post.

10 Replies
oldestnewest

As30 if this is new it might take work and family time to adjust as it will yourself.

No one understands how scary it is not being able to breathe unless they have experienced it.

Welcome to the forum, and the Asthma UK site you will get a lot of support here.

It might be beneficial once see OT to get her to talk to work. If it's only this year and you have worked somewhere a while they may not realise this is long term.

Asthma is a life threatening condition, you don't say what you do for work but you may need to look at the environment if industrial could you have become allergic?

If health and social care note asthma makes you more prone to infections and you would need to be careful when working with vulnerable service users.

You are protected at work by the Equality Act 2010 - employers need to make reasonable adjustments and are not allowed to discriminate against you.

Your husband will not understand what is happening and it might be best to take him to GP /asthma nurse to look at how this might impact your lives and how he can help you. Often friends and family can hear tell when we need to use our inhalers before we do and it's best if the say "you need to take your inhaler".

Get a good asthma management plan which is based on either your peak flow or certain symptoms.

I have had asthma 32 years but diagnosed for 28 years and this year is first time I have ever had to go to hospital.

Good luck and hope you feel better for Christmas.

2 likes
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Melanie1989

Hi, sorry you feel so rubbish

Unfortunatly unless someone has experienced it, people just don't understand how awful asthma is to live with. My husband tries his best but i dont think he understands how difficult everyday tasks are like housework and sorting the children. This forum is the best for support though as there will always be someone who has been through similar. Also if you have any questions or worries ring asthma u.k, they are qualified asthma nurses and can point you in the right direction.

Although something im rubbish at, self care really is the most important thing right now. If you need time out for yourself take it, the house work can wait. Easier said than done i know, but you need to be kind to yourself. Fingers crossed you get an earlier appointment and can sort a proper plan out.

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shirl13

Hi As30. I've been asthmatic since 1967 so in some ways I am a bit blase about it. What a lot of people don't realise is asthma is so variable. I worked with someone who only used 1 or 2 Salbutamol inhalers a year. I go through 2 a month. Mine changed when we moved house in 1990, I am now chronic and have been on oral steroids daily since 1991 when I needed to get back to work after maternity leave. Originally they were going to reduce it to a maintenance dose of 2.5mg. My maintenace is 20mg and I have to increase that when my chest goes worse then titrate back to 20mg. Yes steroids can give problems but they have kept me alive. I am lucky now my kids are grown up so school runs, basketball, swimming, foot, jujitsu taxi drivering as ended. I still have to find ways to cook, clean and shop but realise my limitations. Your husband may be frightened because he hasn't seen you struggling like this before. It would be a good idea to take him along to an appointment with you so he can understand better. I have had all the "advice" from other asthmatics that only take Salbutamol couple of times a month/year - oh yes I'm asthmatic too, you'll be able to do that. Well NO I can't. Do what you can when chest isn't too bad and rest and listen to your body when it's bad. Good luck. You'll get the hang of it over the years and things will improve when you're on the right medication for you

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strongmouse

It is hard when you are first diagnosed as there is no way of predicting how long you will be off sick. No one chooses to be ill especially with asthma! I remember my husband, who is very caring, not understanding at first and finding he was a tad impatient with me. He is brilliant now.

I found this summer with the high temperature and subsequent high pollen and pollution was very difficult to manage. It has taken quite a while to settle down and I've had two lots of antibiotics for sinus infection. Fortunately they have now worked.

You are doing the best you can to get better and working with medical staff. Unfortunately there are so often no easy solutions. You are missed at work which is nice in a way but a pressure for you in other ways! When struggling to explain to people close to me I try to find information which is easy for them to take in.

I think that your line manager's reaction of disappointment is inappropriate. You do not want to be ill. Indeed you tried to go back to work before you were fully recovered. Of course it may be hard for her to manage without you, but that is not your fault. You are ill. Try to explain clearly that you are doing all you can to get well and have seen the doctor and have medication which will take time to work.

Asthma is not well understood by other people and of course it can range from mild to moderate and severe. Plus it can vary. I was first diagnosed 14 years ago (now over 60). It does take time to adjust to for you, your family and work. The most important thing now that your GP has signed you off until after the new year is to concentrate on getting well. Rest when you need to, yes ask for help even though it is hard and be patient while your body recovers from this infection. Don't be afraid to go back to the GP if you need to - hopefully you won't. Well done for asking to see Occupational Health. Print off a basic leaflet on asthma and explain that on top of that you have an infection. Double whammy.

You will probably find that you need to explain more than once - that is normal in my experience. As LD loves lattecoffee said your husband is probably finding it difficult to understand and realise how hard it is for you. You will get there I'm sure. One step at a time and be kind to yourself.

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As30

Thank you for your replies.

I've managed to rest today and get some sleep so I feel I bit better about everything. I have had a good chat with my husband who agreed he didn't really understand how bad things were (he's has mild asthma which has been well contolled since childhood). My parents have stepped in a bit to help with the kids and Christmas (we are hosting).

I am actually a nurse myself but not patient facing. So I feel horrendous the pressure my team is now under. But I have accepted after last night I'm clearly not well enough and won't go back until I am fully better as I don't want to go off sick again and cause further issues for myself and them.

I think as it is so new everything is going to take some getting used to and time to settle down. I have decided to not be so hard on myself and just try and find the balance between doing enough but not too much and take each day as it comes.

Thanks again for the advice. I feel better just speaking to people who understand.

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starveycat

I was told having asthma is equivalent to running a marathon a day. I also read on this site some years ago that to explain it to someone tell them to close their mouths shut shut one nostril and then breathe. On a bad day put a straw up the other nostril and only breathe through that. Be very kind and gentle with yourself

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Weejenny

I was diagnosed last year at 49 and still getting used to all of it. I was told to give my family a straw each to breathe through and that would give them an idea of what you’re going through. I apologise to my family with a hint of sarcasm that I’m sorry it’s not visible and would I maybe get more sympathy if my arm was hanging off 🤗 I’m like you I carry on with every day life and I’m lucky I work part time.

Take care

Jen

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utkmybrthawy

Isn't it awful? The worst is feeling embarrassed because we are sick. Last night I went to dinner with my brother and his wife; spent the whole time trying not to cough and smiling through. Just embarrassing. What I don't understand about asthma is why. Why now? Why all of a sudden? What changed? What can I do to make it go away? My doctors just shrug, but then, I'm in the USA. Still, I saw that you had to wait months for an appointment, so it doesn't sound much better over there! Let's stick together here. Thanks for posting. DK

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picboy

No One who has not experienced asthma can really understand it I work in a shop but if i was working at building or carpentry i would have to stop back on red predsloan so going well now waiting for christmas to be over and going back on my wheat free diet I am almost dairy free any way most of the time also going to a herbalist was talking to an old friend of mine did not see in about 4 years he also got asthma we are both 52 i got it 7 years ago he got it two years ago gave up milk and all wheat things and over the past year has improved significantly he told me not perfect but off all inhalers and he was a cyclist doing about 200 miles a week still not up to that level he says but getting there.

Good luck its scary lonely and people dont understand keep going as best you can but mind yourself you can die from an attack and attacks are frightening and draining watch your peak flow if its down to 1/2 what u are when u are good seek help on the spot. i am about to go all holistic after christmas never thought of myself as having faith in these nuts as i used to call them but my asthma professor can only write out prescriptions for totally poisonous drugs we need them but really can we stay on them for ever It would be better not to but having said that back on the red steroids and feeling good .

Good luck also look out for pets cats maybe dust or chemicals where u work there is a cause but what is it my doctor says something is causing it i dont know what it is but we need to get something into you to keep going and he said red pred is slower absorbed then the white ones which kick in with a bang and make me so dizzy ,

GET MORE HELP FROM YOUR FAMILY YOU NEED IT and tell your husband how you really feel you need his help so bad at this time he has to step up . i know when i am bad all i can do is sit down and do nothing and feel like crap thats asthma for you it sucks

Good luck enjoy christmas fcuk work and all the exterior stuff try to remain stress free its the only way its not easy we all have bills and things to pay for but if your dead it wont matter. I FIND DRINKING COFFEE A GREAT HELP BUT NOT SURE OVERALL IF ITS GOOD OR BAD DRINK LOADS OF WATER PLAIN SIMPLE WATER NOT FLOURIDE STUFF STILL BOTTLEDSTUFF

Ger

2 likes
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robert1957

hello as30 please research magnesium deficiency and symptoms of magnesium deficiency it may help you get some answers to your symptoms good luck

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