Had enough now

[Rainbows22]

Hi , I’ve been having problems with my asthma since the end of November. I have rescue pred and antibiotics and suffer from severe brittle asthma. My asthma has been well controlled until recently and I have lost 6 stone which has helped immensely but since November it’s all gone downhill. I tried to manage it myself when it first went off and had 3 weeks of increased pred and various antibiotics ( I have to have double length courses due to immune problems) . In the end on 18th it all became too much and i went downhill really fast . The paramedics had to give me adrenaline and hydrocortisone and I was blue lighted to hospital. I’m normally given iv aminpohylline but managed without it and after 10 days was discharged home. One day after being home my temp spiked at 38.4 and I was coughing up green gunk so back on the antibiotics. My pred has been reduced to 30 mg and a visit to the Gp after the bank holiday has seen me back to 40mg. But I’m still on antibiotics, still on nebs and still feeling rough. I’ve been told I’ve got to have a low threshold for going back into hospital but I can’t face it again. My asthma is not to bad although very wheezy I’m not that breathless. But I just can’t cope with feeling so rough and doing nothing. I feel like a prisoner in my own home and totally alone and I’m having flashbacks from when the paramedics saw me as I was at a special day care unit/I attend and the nurses say I was in and out of consciousness. I can’t face going into hospital again as I suffer from dis functional breathing as well as they always immediately jump on that and I feel judged. They just they give me oramorph to relax me and then I am just a blob and don’t remember anything and last admission was falling a lot. I feel so alone , so unwell so scared and just a nuscience, where do I turn , what do I do . I’ve been feeling ill now for nearly 6 weeks .

[Hally1973]

I know it sounds like the biggest cliche but I promise you are not alone. I joined asthma uk tonight because, although I don't have the severity you are suffering, I've also been feeling rough for weeks and am sick of it. Christmas night at hospital sucked!!! tonight I started reading this forum. It's hard for those around us and we keep a lot in to stop the worrying. Here we can be us and we are listening.

[Rainbows22 in reply to Hally1973]

Thank you , so true, sounds like you’ve been struggling too. It ustvseems relentless. I’ve also got a collapsed lung at the base on the right and my peak flows are going down not up . It just helps having somewhere to offload it . Thank you for reading and replying , here for yiu too x

[Hally1973 in reply to Rainbows22]

You poor thing, you really are going through it aren't you. Offload away.

[ElizabethC in reply to Hally1973]

Welcome Hally1973. This forum has been so helpful to me too. I found it this time last year when my asthma went haywire after a cold exactly a year ago. I ended up in A&E (ambulanced up by GP) and its been a year of utter hell. Only now have I got a specialist apt booked (privately on 19 Jan) so I am hoping for answers and a plan of action based on proper diagnostic tests rather than the usual "wait-and-see" approach.

Asthma UK have been amazing this past year. As I mentioned to Rainbows 22 below, their 12 week programme is really supportive and helpful. If you haven't done it, I would recommend it.

Hugs.

[ElizabethC]

Oh dearest, you are not alone. I've had a bad 6 weeks too of what is probably walking pneumonia and asthma exacerbations. I was in hospital once and have had three emergency GP visits.

Please do not think you are a nuisance. You are not. The paramedics were there *because you needed them*.

Do you have a consultant/Specialist? It may be worth insisting on being referred if you don't already have one. If you do, see if you can get to see them and discuss the latest issues particularly what should be done when you have to be in hospital.

Also, CALL Asthma UK nurses. They are so good. They will listen to you and help guide you to what questions to ask of your GPs and Specialist etc. Please call them.

Also, Asthma UK do the 12 week Support course. Its free and has various activities via text and the internet you can do but also you get supportive texts as well as (certainly last year) 3 phone calls FROM Asthma Nurses to discuss how you feel about Asthma as linked to the activities. It really helped me and I'm now providing my story in the hope it helps others.

If it helps, have a note or paper on your phone/in your wallet which provides details of all the medications you have normally and what you often get given in an hospital admission and how this affects you. If you can, give that to paramedics. If you are at a place like work or something, where you see the same people, give a copy of that information to them so if you end up in a state where you can't speak/make decisions, they can hand that over too.

Please call Asthma UK nurses. They are so helpful and they can give a lot more useful information.

Hugs. You are not alone.

[Rainbows22 in reply to ElizabethC]

Thank you , I have a specialist but they are so overworked I’m still waiting for follow up since June and they have referred me to the Brompton for tests but have had to postpone them again as so unwell , thank you for your care xx

[ElizabethC in reply to Rainbows22]

I know what you mean about being so sick you can't get the help. I have had the ability to get a specialist since September (I'm going private) but its only now I could get that apt made as in September and October, I was sick (another chest infection!!), my grandfather passed away and my parrot was very sick too (we nearly lost him. He's ok now though but it was terribly stressful at the time). I simply didn't have the energy - mental or physical - to deal with getting my health issues dealt with.

Then November was simply taking stock and then December happened with getting sick again - and here we are.

For me, as its JUST my being sick again and nothing else is causing worries, I have a bit of mental energy to get the specialist sorted - so thats happening in 2 weeks.

I know its hard when you are so exhausted and beaten, but please see if you can get the Bromptom apt sorted. Its easy for NHS to "lose" you if you don't get the apts followed through (it happened to me once years back on a different matter). Its then really difficult to get those apts reinstated.

[Rainbows22 in reply to ElizabethC]

I’ve got the Brompton appt booked but because I have ti be very well and actually omit taking needs fir 5 days beforehand it’s been postponed till April. I’ve just been told by my gp that I may have to go back in because I may need iv antibiotics , I’m just scared of the judgement I get and the nhs is so stretched at the moment . Didn’t have the best experience over Christmas as was really just left yo get on with everything , I even fell over and sliced my hand open on a broken cup I dropped. Normally the ward I go to is amazing but a lot of staff changes and pressures have meant I felt abandoned. You really help with your care and understanding and kind words thank you

[Hidden]

I know exactly how you feel, I have been in the situation in the past when nothing seems to work. Although things are a lot better now there is still a lot of ignorance about asthma by those not effected by it and this sometimes makes you feel like it's your own fault.

Asthma is a common condition and all asthmatics will understand how you feel, you will get through this, you are never alone.

I hope you start to feel better soon.

[Rainbows22 in reply to Hidden]

thank you , just feel it’s all my own fault and now my peak flows have started to drop again and I am having trouble sleeping but unless I’m really bad and need to go in on s blue light I feel I am wasting hospitals time , what else can they do that I’m not doing at home

[PPxwoods]

Dear Rainbow22

You are having a rough time

I hope it will settle down

There are new drugs on the market which are helping people with severe asthma

They are NUCALA and Zolair

They are having good results reducing attacks

It’s a monthly injection

Hospital are reluctant to use because of cost

15000 sterling a year

Talk to your GP re same

[Rainbows22]

Thank you , know I don’t qualify for zolair bur am awaiting a new histamine chalsnge in April to test if I meet nice guidelines . These were due next week but to unwell to take them . I already have a daily injection for immune deficiency which costs over £70 a day 😞

But thank you for ideas x