Feeling a bit out of things!

[freefaller]

Hello all,

Awake because on second night of 5 day course of steroids and antib's. Took herbal nytol at 8 to hopefully get some sleep. Read my book for an hour and slept from half past ten to 3am. Woke up wheezing. Took my inhalers, started to cough took some covonia to try and settle that so I could get some more sleep - though have had half an hour longer than last night. Then had to go to the loo. Got back to bed -eventually found a propped up position that was almost comfortable. turned radio on to find a programme on the world service about torture in Pinochet's Chile. Turned that off as didn't think it was conducive to sleep. Then laid awake and couldn't find anything nice to think about! My GP telling me on Thursday when he prescribed more antib's and steroids that he had not heard of aspergillosis and doubted the consultant at the local hospital had so a good thing I was going to Manchester. So I feel a bit miserable and lonely here at the moment. I know things will look better in the daylight just wish I could get rid of the haemophilus influenza that is still hanging on in my lungs. I had to ask for medication for that after it was found back in April. Thought I would have been called to the GP or the consultant would prescribe but at my last meeting with him had to ask if it was still in the latest test results and should I have a prescription for it. Since then I have had copies of all the letters from the consultants I have seen since 2009 - three in all and am amazed at the discrepancies. I have filled two a 4 sheets with lists of the mistakes in the letters! Can you believe it? The worst is that the letter sent to UHSM states that I was admitted to hospital twice in my mid thirties. Nope not once in my thirties at all! When I was 16 for ingrowing toe nail. When I was 21 for asthma exacerbation. When I was 47 for fibroid embolisation and when I was 49 for loss of blood. I have also in the last 6 months been stated as aged anywhere between 33 and 64. Well I am somewhere in that age group - 55 actually but I wonder if they are talking about me or someone else. Doesn't instill confidence does it? Along with saying they have discussed things with me which they have not and I have a witness to that on two occasions and other annoying little things I was not very happy. So glad I found out. Must find a way of recording the consultations. If I had not seen these letters I would not have found out quite a few things that should also be checked out - not even sure if my last consultant was aware of these himself as he never mentioned them, but they were in the letters from the consultant I saw two weeks before seeing him. Now have to ask someone about these. Glad I am not bugging my last consultant and his overworked nurse any more though. I did feel sorry for them. They are trying to recruit more nurses and doctors to our area but it is hard and they are so overworked so getting me with a rare (ish) diagnosis propbably "frosted their cake". I also took up a lot of their time as wanted to ask lots of questions and ended up seeing them every week for about a month at their rapid access lung clinic which was not exactly the right place to be - or at least I do not think so anyway.

Ah well maybe sleep will come in a little while. Sorry for the long post everyone.

Love and hugs to you all

Sian

xoxoxoxo

[freefaller]

Sorry this seems to have posted twice in two different forms. The first one disappeared so started again and looks like I managed to post both. Not finding it easy to use laptop at the moment as there are icons on the edge of the screen which seem to take me off the page or make a post i am writing disappear and then when I write the post again post both of them. Sorry everyone I must be boring you.

[Mariongisela]

Morning Sian,

You have my sympathy with the lack of sleep and the frustration with the NHS. We suffer on both those scores - John's coughing had me up on the iPad at 3 - fact of the matter we both cannot remember when we had a full nights sleep - it is worse than when the children were young and I had the night feeds! You can see why sleep deprivation is used for torture. Wee see different consultants every time and everything the consultant has a different view and we go through the same old things - we also have a gap who is ignorant is all things aspergillosis related. Wee have no faith whatsoever in the NHS down here in Kent.

I wished I could help with giving you advise on how to stay asleep but if anyone can we also would be grateful.

Take care and have some comfort in your not alone

Marion xx

[freefaller in reply to Mariongisela]

Sleep does eventually come! Next time I am going to take the steroids at night - right before i go to sleep - what difference will it make? None by the feel of things! Ha ha. At least I don't have to get up and go to work which is something. Thanks for your post. I think the NHS everywhere is ina bit of a mess with Doctors and nurses generally trying their best.

Hope you manage to rest during the day if you can. Something I never did - even when i visited my other half when he was working in the middle East I couldn't get into having a siesta - I used to read for an hour or so and then we would go out for a drive - usually because a power cut would shut off the air conditioning in the room so the car was the best place to be! Thin if you just sit down and relax it can be as good as a nap.

It is no surprise that sleep deprivation is used as a torture.

Love and hugs

Sian

xoxoxox

[fcag2001]

Hope you are feeling more settled in the morning. Hang in there Manchester lung centre is just terrific in getting to the root cause of lung problems and have trust in them. Are you in Scotland and want to join patient information forum?

[fcag2001]

Forgot to say ask your home consultant if you could have a nebuliser and use it with saline and salbutamol three times daily really helps with breathing and so more Relaxation for sleep. Also ask GP,if they will consider prescribing trazadone for you one just 1 at night can make a big difference.

Good luck think of taking part in a mindfulness course to help with breathing and sleep.

[freefaller]

Thanks never used a nebulizer or taken real bumper sleepers maybe it is worth it if this is going to be a regular thing. I have never had this problem before when on steroids just the last time and this time.

[freefaller]

I live in Wales not Scotland I don't think there is any thing for us poor people in Wales other than Manchester. Thanks.

[GAtherton Administrator Fungal Infection Trust]

And that is why involving the patient in their own diagnosis & treatment is important!

[freefaller]

Thank you. Sorry the way I said "There is nothing for us poor people in Wales other than Manchester" Makes it sound dreadful doesn't it? It must be this thing my Yorkshire partner has about that other place on the rainy side of the pennines! Needless to say this will be my first ever visit where I have stopped in Lancashire. I am looking forward to it not just for the wonderful hospital there but would love to see Manchester Corn Exchange. Have been told it is fantastic and have wanted to visit for a while.

Thanks once again Mr Atherton.