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Hospital appointment

So up at St. George's tomorrow for my xolair injection. Nervous this time round. Am taking a friend as I have had multiple people encouraging me to ask them about talking to someone about the emotional side (I keep putting off asking) that seems to have hit me

Like a brick wall recently. Has anyone else struggled emotionally with their asthma. Mine has been so uncontrolled in the last year with 24 a&e visits and 7 hospital admissions I'm at a loss with everything. Xx

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Oh my goodness me, you did have a horrid year last year. This year, particularly this summer has been horrible for anyone with a lung condition, and particularly allergic and infectious uncontrolled Asthma. I have always struggled with the emotional side, both for Asthma and Eczema. The long-term effects of oral steroids are taking their tole on me. I have extreme mood swings, and suffer from Anxiety. My bones are thinning nicely. All of these are well known to affect people with long-term health conditions. I really can recommend asking for some help for the emotional side from the experts trained in helping people with their long-term health conditions. I went to someone last year. I was also going to do Mindfulness, but I was always ill so never got. I do get lonely, then I come on here, to see if I can pass on some of my experience, and I feel better. I will be going for some training this week to learn how to inject myself under the skin, into the fat (got plenty of that), for my Immunoglobulin, as I don't make my own antibodies. It is going to be a busy week.

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Thank you. Yeah it's still all a bit new. I've always had asthma but not to this level. And the guilt surrounding it and not being able to do as much with the kids has really got to me. Plus the anxiety side of things. Good luck with all you have going on next week. Keep us posted on how you are. Xx

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I regret stopping xolair after 2 5 years but my Ige far too high to go back on it and stricter guidelines. I too am on anti depressants and worked as a psyche nurse for 30 years. I've become so ill can barely walk upstairs and they said there's nothing more they can do so it affects the whole person but I found my consultant was hopeless at listening. 10mins then your out unfortunately!!

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sorry to hear your having a crap time of it, im also struggling with my asthma this yr first time since i was a teen its been this bad, and have hospital appt in aug. no real advice to offer but if you dont ask you dont get im sure your not the only one who needs extra support and these people are trained in the field of asthma, hope it all goes well xx

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You can do it :-).

On the guilt thing I am with you there. It still floors me some days now. But you have to keep telling yourself you are doing the best you can. You didn't ask for this but you're doing all you can to fix it. I was really worried about my 2 but their schools have been great in offering support, particularly when I'm in hospital they ask we let them know and they keep an eye on them. They also do a bit of Emotional support with them etc in general so that's helped. I've learned what I can do with them and just focus on that. I really worry that they will look back on childhood and think I did nothing for them but it was explained to me if you're doing the things you can do they will look back and think "wow even though mum was ill she still did these things" and even if they don't you know you did your best.

Good luck today xx

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Thank you so much. It's so hard with kids. I just feel like they are missing out all the time. I have been given some

Self referral numbers today and the nurse is going to see if my consultant can refer to a severe asthma psychologist at the Brompton. Xx

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That's amazing I'm so glad you spoke about it.

I know it's so difficult but they will know you're doing your best.

You've taken a massive step asking about help. I really hope the referral gets you some where

Xx

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Hi again. I hear you and feel for you. I have been up and down with mood swings, anxiety, most of my life. 14 yrs ago learnt to meditate at a local buddhist centre and really helps me. It won't cure you but it will help you centre yourself and become less anxious. It seems that with each new drug there is a period of adjustment your body has to make and we are in turmoil until it makes that adjustment. I think thats why we go through this emotional roller coaster ride. There will be a local centre which will offer free lessons in mindfulness (the new buzz word for meditation) There is a company called N'compass which you can self refer. Ring them up and speak to the triage person. 0345 013 8208 I have had personal experience with these people through my husbands illness. He thought they were fantastic and now volunteers for them.

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Thank you. I have been given a number to self refer in our area for now and the asthma nurse today said she is going to talk to my consultant and see if they can refer me to someone who deals with severe asthmatics at the Brompton. Hopefully this will help x

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Hi.... sorry to hear your struggling, I too have had emotional issues and was reluctant to talk about it .... but glad I did, I now take meds for depression, mertazarpine.... Ive also been on xolair coming up 1yr... was supposed to be the great White hope for me & was going to Finally get me off the dreaded roids, unfortunately that hasn't happened and I'm still on 25mg daily !!

Don't give up hope and don't suffer in silence !! Good - luck

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Thank you. Yeah they have now started to reduce mine. I have come down to 35 in the last two weeks. Due to drop to 30 tomorrow. Not been below 30 since August so we shall see. Have been given some numbers to phone and the asthma nurse is going to try and get my consultant to refer me to a psychologist at the Brompton. Hopefully it will all help.

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I'm at the Brompton too ... Great hospital

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It has helped me a lot joining this group; just writing about any issue connected with asthma but especially emotions and depression. Don't keep it in!

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Listen I was on it 2.5 years and you need to ask GP for referrals to local MH team. They may help with CBT and mindfulness and there's pulmonary rehabilitation worth physios in my area where it's like group therapy.

I was a psychiatric nurse for 30 years and unfortunately have a couple of other conditions and now pretty much live in one room with air conditioning to help me breath. Don't feel you are not like several of us. Ask for the help and I would suggest GP or a nice asthma nurse but they accept there's an emotional component but aren't trained in talking therapies. Good Luck hun, I have been on antidepressants for years and my asthma is so bad now I can't walk up or downstairs and the impact financially when you can't work. All these things affect you emotionally and the guilt is awful. I'm looking myself to see a psychiatric nurse and bite my lip as I trained several of them. Ask for help hun xxxx

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Thank you. I have now done a self referral and have been sent through a telephone assessment. I am hoping this will help. Xolair does seem to have helped a bit but in no way solved all the problems. I am trying to reduce prednislone at the moment which is tricky.

Did your hospital re test you IGE level at some point as St. George's haven't tested mine since I started xolair.

Hope your ok and can get the help you need

Jenna

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No they didn't retest add they said there was no point but I paid privately and it was still 1845. I wasnt seeing results if heard of like reducing inhalers and still on high dose Pred and regular infections. It took a year to come off Pred 1mg a month.

I took the decision to stop it as I thought it would stop those things but they are talking about refer to RVI in Newcastle complex asthma clinic. I've heard Brompton is great and wish I could have gone there. Good luck x

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Ah ok. Thank you. Yeah I doubt I will get to the reducing inhalers stage as trying to reduce pred is hard enough. I am down to 30mg from 40 at the moment but am having to top up occasionally.

Hope you can get some more answers and options soon. Take care xx

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Jenzzie

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Hi all ok? X

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Sorry Jenzzie I'm all over the place with this thing. I did write a reply to you but it's obvious it's just put your name. I'm so sorry copies my memory is terrible with the meds I'm on and now can't remember what I was writing about.

I tried to write in the British Lung foundation forum and did a long thread with some questions and it didn't print. It seems I'm still learning these things but I genuinely can't remember what I was saying. I will say I hope you are okay and that your breathing is not as bad as mine currently.

Hugs x

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Ah thank you. Breathing is very hit and miss at the moment. I have St. George's on Monday so hopefully will help a little. Luckily I see them every two weeks so I'm not allowed to go too far off course with things.

Hope your ok. X

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