Can’t take much more :-(

[Lcr88]

Hi...

I don’t normally post on here, just a lurker reading other posts generally. But I just have so much running through my mind at the min along with feeling physically broken I thought posting might help.

For the last 7 months my asthma has been hard to control, I couldn’t tell you how many exacerbations I’ve had there’s been so many. Tried inhaler after inhaler and currently on my Ventolin, Fostair and Montelukast. I’ve had 2 visits to A&E in the last month, most recently Tuesday when I went to the asthma nurse for

Spirometry (to start the ball rolling for a referral to a specialist) well my chest wasn’t feeling great to start with and had to stop half way through because it triggered an attack, nebs weren’t lasting very long so an ambulance was called. I feel so exhausted, sore and just feel broken.

I’m off work again and feel like I’m going to lose my job and have no control over it. The worry of this i can feel is just adding to my asthma symptoms. I’m going back tomoro and even though my manager is very supportive and understanding the company has processes to follow and im already on a 1 formal warning for absence (which is supposed to deter any further absences) and this absence is my second one since this. I just don’t know what I can do.

I feel like I have people around me to talk to, but I don’t want to put more pressure on them.. I hate how much they are worrying already without burdening them further with my worries.

I’m just at the point where I don’t think I can take any more, mentally or physically my lungs just feel awful and each exacerbation just seems to be getting worse. I’m scared what the next one might bring. The more I worry the worse I get, such a vicious circle.

The doctor has referred me today to respiratory specialist, as they are concerned they can’t get it under control and want to get to the bottom of it. I don’t wheeze with my asthma, and if I get told one more time my chest is clear I may explode.

I’m so aware that many people have asthma so much worse than I do.. but at the minute it just feels like there’s a black cloud over me and it’s so debilitating

[Hidden]

Hi Lcr88

Welcome to the forum, you're definitely in the right place, I'm sure lots of people can relate to where you are right now with your asthma and your work and chip in with helpful advice. It sounds like it's been a rough time.

It's good that your doctor has referred you, can I suggest you speak to the Asthma UK nurse team too, they can take the time to go through all your medications and see if they can help and advise next steps with you so you're prepared for your appt, they can be reached on 0300 222 5800 or via WhatsApp chat on 07378 606 728 (M-F, 9-5).

Take care,

Dita

[Hidden]

Hey! Sorry to hear you're having such a hard time.

My absences related to my asthma triggered a level 1 absence management meeting. I was able to take my union rep with me which helped. I also took a letter which my consultant had written basically highlighting how life threatening my asthma was and that I'm only ever off when I have to be. Could you get something similar from yours or from your gp? We agreed that I should be referred to occupational health and following this, they seemed to get that I would be off when my asthma flared but that I actually couldn't do anything about it. My boss isn't great still but slightly better than was following meeting.

Hope things improve for you!

[RD23 in reply to Hidden]

Hi both,

Lindsx, sorry to hear you’re having such a rough time of it, I find and I’m sure a lot of others will agree, that attacks can have an effect on you mentally and emotionally so you’re not alone. Having a support network on here has really helped me, my family and friends are great and try their best to understand but coming on here and talking to people who actually experience the same has been great and has really helped lift me when I’ve felt similar. 😊

Unfortunately, it seems a lot of us have had this experience at work, I had it myself a few years ago. I was told by an occi health nurse to always but asthma as a disability on application forms as severe asthma can affect your everyday life and therefore you are protected by the Equality Act. Have you got a union rep or work rep you can take to any meetings? You should be entitled to one.

Your workplace should be looking at what they can do to help you and help manage any factors at work that might affect you. The cold weather affects me so I had an agreement with a previous manager that on a very cold, scrapping ice off your car, winters day, I would come in later and make up my hours so I wasn’t coming out when the air was so cold.

Hope this helps and remember we’re all here for you.

[Lcr88 in reply to RD23]

Thank you for replying. It is having a massive affect on my mentally just as much as physically, because each attack just seems to be getting worse and I’m so scared of the next one coming.

I think I need to have a look in to getting a union rep, not too sure where to start.

In my last meeting they spoke about maybe fixing my hours, as I said my asthma can sometimes be worse in a morning/at night. But since then the last two absences haven’t been for that reason, they’ve been because I’ve been hospitalised.

I’ll have to see what today brings. I’m the biggest advocate of that there’s no point in worrying as it doesn’t get you anywhere, but with my asthma I just can’t seem to help it. It’s so tough.

[RD23 in reply to Lcr88]

Research Unite and look at joining them or do you have a forum at work with employee reps? Honestly any advice you need just ask as I’ve been there and know how worrying it can be.

Asthma attacks are worrying and sometimes it’s difficult to just bounce back. Have you tried writing down how you feel? I’ve tried that before and just getting it all out and down on paper really helped me. I’ve rung the Asthma UK helpline before as well as I’d got to the point where I just didn’t know what to do. Give yourself time to process it all, we put our bodies and mental strength through a hell of a lot so it’s ok to take a few days to get your head round this, you’re only human after all. Wish I knew what to say, hope that helps.

[Lcr88 in reply to Hidden]

Yeah the letter from the GP might be a good idea, they have been amazing with me so think I’ll have to discuss it with them. I had a occupational health referral earlier this year, at the time I thought it was just cold air that triggered it so the report represented that I’d be expected to have time off during the winter months. But that’s kind of out of date now cos my asthma has developed so much since then. I’m going back in today so might have to talk about maybe getting that updated. I don’t have a union rep, I’ve only been in the job since November last year and not sure how to get one to be honest!

[Dawk1]

Hi Linda

Like you I have hard to control asthma.

After a year of inhalers,antibiotics and preds,I am now on monthly xeolair injections(steroids) while they help me keep well the damage they do to your body isn't good. So at last the asthma consultant recommended me for the drug Mepolizumab.i start this in 2 weeks time.just to note I have eosinophilic asthma.i don't always wheeze just cough a lot.maybe it's worth speaking to your consultant.good luck

[Lcr88 in reply to Dawk1]

Thank you, that’s really interesting I’m going to have a read up on that because I’ve not heard of it before. I think it will be a little while before I see a consultant but it will be going down on my list of points to ask about.

[Nutzs47]

I was referred to our ohs department and was told my asthma comes under the disability act this doesn’t stop you from being disciplined for time off but does make it harder for them to sack you .After my last attack I am now on fostair ,spiriva and montelucast and my manager monitors me better than I do myself ,to the point that if he thinks I’m wheezy he’ll make sure I do a peak flow check (I have a spare one at work ) and makes sure I take my reliever .It does help to have a few people who are proactive around you and know your asthma plan too x

[Matman]

Is there anyway you can get to see a Specialist faster than the typical NHS waiting time? Maybe by visiting and nagging at your GP - several times if necessary - once the Specialist appointment date arrives? If you make a persistent nuisance of yourself with your GP, you may be successful in getting the right NHS treatment faster.

Another alternative to speed things up (if you can afford it) might be to seek a Private Consultation. Not cheap (typically £300 to £400 excluding the costs of any Tests / Images and a second Private Consultation to review the results) all of which can significantly ramp up the expense. (Note, if you decide to go Private, get confirmation of Private Consultation Fee ‘in advance’ as some Private Consultants might try to charge you a lot more than the ‘typical’ fee for a Consultation).

[Lcr88 in reply to Matman]

I’ve asked the doctor today what kind of timescale the waiting list is and she’s going to find out for me. I am contemplating paying privately if it’s going to be a while, even tho it is so expensive I feel like there’s no price on my health and because it’s having such an impact on work too.. it’s worth looking at.

[Matman in reply to Lcr88]

If you go Private, suggest you start your search by visiting the websites of a few of the respected hospitals who specialise in Respiratory Health, then look at the Bio’s of a few of their Consultants. Most of the good Hopitals have web pages which lists their Consultants and their qualifications / experience. No idea where you are based or how far you’re willing to travel but it seems that the majority of noteworthy hospitals are in London, UCLH, Brompton etc. Consultants at such hospitals typically offer Private Consultations / Treatment too. Good Luck whichever way you go.

[Erin001]

Hello there,

I'm so sorry your having a rough time with your asthma

I've had quite the time of it myself

I've had at least 18 ambulances since January at least half or more involved admission and this is the most I've had all my life (used to only require an Ambo once or twice a year ) and I don't go to work but I'm at college which they were supportive but always hated having time off because I'm in hospital or too sick to come in. I missed a lot of days (somehow I only handed in one assignment late ) but I also missed loads of placement days including missing a whole week of starting a new placement because I was in hospital

And I'm like you I know that there are people worse of than me but it's really tough to deal with

Asthma is horrible however bad, we are all in the same struggling boat. We are always here to help one another get through each breath and each wheeze/symptom

I hope you get to see a consultant quickly and get on the road to recovery x

Message us whenever you need it whether it's good bad or just a mundane normal thing you want to post about your welcome to 👍 this is always a good place to post anything that's going for your mind whether it's a rant a question or anything it's always helpful just to let it out and hear everyone is supporting you x

Sorry I wasn't much help, I hope by knowing others are in the same boat that you feel less in the dark x

Let us know how you get on x

[Lcr88 in reply to Erin001]

Oh gosh! 18 ambulances, that’s awful.. I hope you’re doing a bit better now? Thank you for replying it really does help knowing other people are in the same boat, it can feel so isolating because no one around me suffers with it. I’m now signed off for the week and need to keep my thoughts and worries about work at bay because all it will do is worsen my asthma. Such a nightmare!

[lucia_m]

I’m really sorry you’re having such a hard time. I had a similarly rough period earlier this year and it got me very down. I also got very anxious about the amount of time I was taking off work, and I think the anxiety contributed to making my asthma worse. I am lucky enough to have an understanding workplace - sadly this isn’t the case for everyone, but joining a union if you can would probably help to give you an extra bit of protection.

Have you got any holiday you can take? I took quite a big block of time off earlier in the summer and it’s really helped - I was able to get some proper rest and relax, and my health has been better since.

[Lcr88]

Thank you so much for all of your replies, I really appreciate it and it’s reassuring to know I’m not on my own, all the advice is so helpful and I’m definitely going to be using all of it.

I went back to work Friday, managed to get through the day, my return to work interview was done late in the day and wasn’t finished due to my shift finishing so I didn’t get chance to ask some questions I had in my head about the next steps.

Went back to the doctors this morning as they wanted to see how I was after the weekend, I still feel rubbish, peak flow is low.. using my ventolin 7-8 times a day 3-4 puffs each time, it’s just not lasting. The GP was lovely but concerned that I wasn’t improving and thinks I have an infection, so on antibiotics and steroids. She’s signed me off for a week too.... and really re-iterated the importance of making sure I’m better before thinking about work, how dangerous it can get. It’s so hard because I know she’s right, but I got upset because of how much time I’m having off. I just want to feel normal!