So, I've had asthma for nearly 4 years now, and was diagnosed as 'brittle' two years back. I also have depression stretching back to when I was a teenager (about 10 years or so). I had thought that I was ready to come off my meds for the depression as I am starting a new period in my life. I graduated in 2009 but was unable to get a job related to my degree due to problems with the degree being recognised. So, I ended up unemployed for a year before starting work in a supermarket. Being employed helped my mental health a lot as I was able to earn my own money etc and could see a possible future life for myself. Over the months though, I became slowly more and more down about everything - I had not worked so hard in university to end up working in a supermarket! So, with the help of a family member on the other side of the world who has amazingly offered to give me funding, I have enrolled in another degree course (in a similar area to the first). One issue with this is that I have to move 400 miles away to partake in the course.
I had to move back in with my parents a few months after starting my job in the supermarket due to my declining health with the asthma, but being the incredibly stubborn person that I am, continued to work even though I wasn't in the best of health - this leading to my colleagues having to call an ambulance on several occasions. I am relocating in the next six weeks (alone), and stopped working in the shop about 5 weeks ago.
Currently, I am operating on a day-to-day basis, with more bad days than good. Medications I take for the asthma include - ventolin, montelukast, uniphyllin, spiriva, omeprazole (for reflux) and long-term pred. I'm just feeling like the asthma is so uncontrolled but I have no idea if there is anything else the GP can be giving me? What is the next step in the treatment ladder? I feel I have deteriorated since quitting my job and am worried that I might not be able to take on this course. But if I can't even be well enough to get to university, how can I expect myself to be able to work again? Am I going to end up unable to work and on DLA? Am I even entitled to DLA? Feeling like life is over before it's even started!!! Argh!!!
What a ride you've had! A lot to cope with, but have to say I'm impressed that you've been so persistent about getting where you want to be and not letting it all get you down *too"" much. On the other hand, the asthma is not going to be helping things at all obviously. I remember you posting before about problems with your work being probelmatic about time off and you going into work when perhaps you shouldn't have because of their attitude, so I'm glad that at the very least you don't have to deal with that now.
Are you just under a GP at the moment? Have you seen a consultant previously? (sorry can't remember if you said before, hard to keep track of who is or isn't). Because on that much, esp long-term pred, and still uncontrolled, it seems the GP is not necessarily going to be able to do much for you and you should be under a consultant. I would make an appt with your GP asap to discuss all this and ask about a referral - perhaps they could refer you to a cons near your new home, if you're moving soon? But either way, I think this needs someone more expert, as you can't just stay struggling on all that, especially not when it's affecting your work/study. I know nothing about this myself but it may also be that if you're studying, there are some things which disabled students' allowance might help with if studying is specifically affected - but like I say I don't know the position on that, there are probably others here who are better placed to advise on whether that's appropriate and what they did.
I hope this is at least vaguely helpful - the AUK nurses might be able to offer more advice and a good listening ear, but suspect given things they've said to me that they would also advise a speedy consultant referral.
Good luck!
Hiya,
Yes, I have an appointment with the GP on monday morning, but like you've said, I'm not sure she can do much as it is more of the consultant's expertise (he's a specialist on difficult asthma). Having said that, I saw the cons a couple of months ago when he arranged for me to take the Mannitol challenge test and my asthma flared after taking the placebo, so the remainder of the test couldn't actually be done. Now he's not 100% sure it even is asthma.
If I'm honest, I'm reluctant to mention anything to the University about my illness. They only have about 50 places per year for this course and, having been given one of those places, I would HATE for it to be taken away again if they thought I couldn't manage. I have worked so hard for this - I flew the 400 miles by plane in January and stayed overnight just to be able to attend the interview, which lasted for five hours.
Thanks so much for the supportive reply - it really means a lot to know there's others out there going through similar (and worse) problems!
I wouldn't worry about needing to continue your meds for depression. I have had depression in my 30's (now 50) and during stressful times I have to really take care. You have stress from your uncontrolled asthma and moving is on the list of most stressful things and you are doing it in a big way. Over the next 6 weeks when you are not organising everything, can you rest as much as possible to help your asthma be calmer and also have special times to recharge your mental health also?
When I did come off the anti-depression tablets, I did it when my life was very calm, I felt fabulous and cut down very slowly, like half a tablet every week and reviewed each week. I learned also from a colleague at the time who had depression periods in her life that coming off the medication does feel very different as the tablets numb our emotions and I forgot how to manage those emotions.
Good luck with everything, it all sounds very exciting! xx
Sorry you're going through a rough time, i think others have made really good points, i would also add that i know a lot of resp clinics in hospitals have a psychologist/psychiatrist attatched to the clinic, they are obviously really good at helping you to come to terms with the difficulties of constantly being SOB and uncomfortable, and the obvious restrictions this places on your life, and they might be able to help you work out what you are and are not able to do, it might be worth asking your consultant if there is one at your asthma clinic and if you can see them?
I would also say that if you are going to university it would be covered by the disability discrimination act if they didn't let you attend to course if you are able to manage - do you think you would be able to? I'd also look into DSA (disabled student allowance) as there are a few ways they can help you to keep up. not sure how often you're in hospital but i have been given a laptop and voice recorder to help me keep up when im missing work while im in hospital. i also know of people who have had the 'extra' cost of an en-suite room paid for them for the times they would have difficulty getting around the flat and so they need the bathroom to be as close as poss. There are lots of different things they can do to help, obviously it depends on your individual circumstances, but might be worth looking up and seeing if you're eligable!
is there a good GP/Nurse at your practice who you can sit down with and work out the problems you might be up against at uni and living alone? I know that for me ringing 999 can be tricky if i'm unable to talk and am alone in the house. If im uncontrolled i will arrange for people who know my name, address, and DOB to keep phones on near their bed so ican ring them if struggling and they'll know if i cannot talk that i need an ambulance, little things like that which just put you a bit more in control might help with the practicalities of living alone when so unwell.
I don't get DLA myself, however i would expect if you are too ill to work then in theory, that is what DLA is for, so you *should* be eligiable, i know some people have had difficulties in the past, but like i say, i don't know, i would say though that there is no harm in applying, they wont give you it if you don't need it, so whats the worse that can happen!?!
Hope some of this helps, even only a little bit, and i hope you are feeling better too. Mental Health is really linked to physical health, so it is really worth making sure you are mentally as well as possible in order to also help your physical health problems!
soph!
Hi all,
Many thanks for the supportive replies. I will talk to the GP on Monday about the next step of treatment as I know I will not be able to manage Uni if things remain as they are now and time is running out for me to get things sorted before term starts. The Uni are extremely strict about getting/taking time off, especially since the time not spent in the University is spent on placement, which starts in week 5. I start with 16 hours a week on placement with the rest of the week spent in Uni.
The cons wanted me to taper my pred, reducing my maintenance dose from 15mg to 7.5mg at a rate of 2.5mg per month. I've managed to get to 12.5mg, but with my lungs protesting so much, I'm VERY reluctant to go any lower. I would actually prefer to go back to the 15mg! With taking so many meds (including seretide, which I forgot to mention - plus meds for my depression and the high blood pressure caused by the pred, AND iron tablets since I'm anaemic) surely there is some other drug I can take above the pred?? Or injections or something?! Sorry, I am just so frustrated. I have finally managed to get my career going in the path I always wanted it to go, and now am worried that it might all be for nothing if I'm not even going to be well enough to work after it all.
As for moving on my own - I have thought about things like setting up an informed message that I can text to the 999 service (recently found out that they have a text service that people can use if they have a condition which affects their speech etc, or for people like us who cannot talk during an attack) if I need help, always having a packed bag by the door that I can just pick up if I'm going to the hospital so I can have everything I need (change of clothes, spare phone charger etc). There are some environmentally-friendly cleaners I can buy for cleaning kitchen/bathroom which have no fumes to set me off...
Again, thanks for everyone's comments - it is really helping to have people out there who know what all this feels like!
DLA, Disability Living Allowance / PIP . Personal Independence allowance is a benefit that can be received if you are working to help you with everyday things such as care and mobility. It is not solely for people who cannot work. Being too ill to work doesn't entitle you always to getting DLA / PIP. ESA is the current newer benefit for people who are unable to work and even then it can be reassessed every year. (was Income support / incapacity benefit)
DLA is to help you live life more. It helps me with being able to do some permitted work and being able to get around with a specially adapted car. If you apply now you will be applying for PIP not DLA. DLA is no longer available and all of us on DLA will be transferred over (hopefully) to PIP in the next few years.
The criteria have also been tightened up greatly... though I am not looking forward to being reassessed... currently I am relying greatly on lots of people and care as I am using oxygen at home nearly 24/7 . But When I am able to I do some easy admin work and admin volunteering too.
Back to the Asthma, often mental well being and chronic physical illness go hand in hand..... you have to be superhuman not to get fed up etc living with a severe chronic illness such as difficult asthma.... I am severe / brittle and have lots of ups and downs. physical downs do lead to me feeling thoroughly fed up at times, I have seen psychologists and the last time she said I had good coping strategies and am already doing the things she was going to suggest.
Prednisolone can cause lots of psychological issues in itself - as well as the other side effects.
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What a ride you've had! A lot to cope with, but have to say I'm impressed that you've been so persistent about getting where you want to be and not letting it all get you down *too"" much. On the other hand, the asthma is not going to be helping things at all obviously. I remember you posting before about problems with your work being probelmatic about time off and you going into work when perhaps you shouldn't have because of their attitude, so I'm glad that at the very least you don't have to deal with that now. 
soph!
Frustrated, confused and feeling generally lost....
