20 years gone too soon.

Its the 14th of December. A day that seems to come round each year all too quickly. Now it is not only one person I lost on this day but 2. There are not many days that you will remember exactly where you were and what you were doing but for me the 14th December I remember exactly what I was doing last year and also 20 years ago.

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20 years ago my Uncle tragically died. I remember it so well and I hate that I do. Me and my younger brother were at my Dad and Step Mum’s for the weekend. We all went to bed on Saturday night as normal. Early hours of the morning the phone rang and it was the call to say Uncle Dermot had had a traumatic brain injury and was down in Nottingham in the hospital on life support. It is so strange the things you remember, while Dad was making arrangements to drop us back off at our Mum’s and go down south, me and P were in the front room and he came out with ‘there would be no more Kukuri’s’. I have no idea why it stuck in my head. Uncle Dermot was an officer in the army and travelled far and wide. He had no kids of his own but would bring us gifts back from his tours. I think now they would for sure not let him give us things such as kukuri knives and other souvenirs from various countries. Dad took us back to Mum’s, on the doorstep I remember Mum giving Dad a big hug. I don’t remember my emotions at all really. I went to school as normal on the Tuesday and it was on the way home that I realised the enormity of what happened because it was on the front page of several newspapers with his picture which you couldn’t miss. We didnt spend a lot of time together as he was away most of the time but looking through his photo albums which he kept throughout this life as a sort of diary I realise just how much of packed life he lived. In a short 36 years he did some of the most amazing things. When he was home on leave he would always make time to spend with us.

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The comment that went with these photos made me smile. The first one was Dermot meeting me for the first time but keeping his distance. The second photo was ‘somehow ended up with babysitting duty’.

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This was taken before we left Granny and Grandpa’s when Dad got married to Carol. My second cousin Fio is the other person in the picture.

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Uncle Dermot with me and my younger brother.

I really enjoy looking at his photos. He makes me feel very proud that he was my Uncle. All he achieved is amazing. It is scary to think in 3 years time I will be the same age as he was when he died.

dDcNhrJkRVaw4BiAiXXDxA.jpgFor a few months I think Dermot was stationed at Edinburgh Castle. I recall thinking it was amazing that he was living in the Castle and was able to take us round. The stick my brother is holding is Dermot’s officers cane.

Not only did Dermot die on the 14th December but last year Granny also died. There is something rather special about her dying that day. I don’t think she ever got over Dermot dying. He was so young, how does a mother ever get over the death of a son. I don’t think you ever do.

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Since my Grandpa died I became a lot closer to my Granny, spending time with her, tasing her out to different places. Throughout all the troubles she always had my back and would look out for me. I never thought she was going to die when she did but there was something so peaceful about it. I got a phonecall about 3 in the morning that Granny was struggling to breath. She had a bad chest infection which was making her asthma worse. I went to the nursing home in the middle of the night and sat with her waiting for the Dr to come. She had some nebulisers and it settled her chest really well. So once she fell asleep I left and got some sleep. I visited Granny after work and she was brighter, and I wrote some more of her Christmas cards which she was desperate to get out but didnt have the energy to write them so I did them. An hour or so passed and she got tired so I left and posted the cards. Just over an hour later I got a call from the nursing home to say she had died. I was devastated- it was so quick, I had only been there just over an hour ago and she was chatting to me and now she was gone.

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(I love this photo of Granny aka Great Granny Annie proudly holding baby James)

I took a lot of comfort from her dying on the same day as Dermot died and also she joined Grandpa who she dearly missed as well. I do miss visiting Granny and all her quirks- she drove me round the bend a lot and could get so argumentative at times when I just give up and say yes!!!

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The 14th December is a day I find really quite hard but reflecting back on memories and the good times makes it that bit easier. I know one day I will join them as well and be reunited with Uncle Dermot, Granny and Grandpa.

I found this photo of Uncle Dermot in his photo albums. I love the silhouette and it reminds me of the soldiers who are gone but not forgotten. Uncle Dermot and Granny may both be gone but they will never ever be forgotten and Grandpa won’t be either.

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People with bizarre ideas!!!

My post on the 4th September 2018 focused on when I was going to see a change in my asthma control since starting mepolizumab. It was about the unknown because unlike salbutamol or prednisolone there is not an immediate effect, you have to be patient and allow the drug to work.

I get a lot of different comments left on posts but this one stood out to me as absurd and almost dangerous if read by someone who then went ahead and followed their advice.

PLEASE DO NOT DO WHAT THE PERSON IN THE COMMENT SUGGESTS. ALWAYS FOLLOW WHAT YOUR MEDICAL TEAM SUGGEST- IF YOU ARE WORRIED ABOUT YOUR ASTHMA AND TREATMENT SPEAK TO YOUR TEAM (CONSULTANT, ASTHMA NURSE, GP, PRACTICE NURSE) ABOUT IT AND THEY WILL WORK WITH YOU.

This is the comment:

When is it going to start working? So I am one of all and I were suffered from asthma. Ihad moderate asthma with COPD by PEF markers. My asthma symptoms were not too bad but everything went wrong when I took ICS inhalers. So I had occupational decease. Doctors did not cooperate with me and I made my choice. I began to take care for my healthy alone. The first step I have done – I tried to stop using all kind of ICS but doctors did not know about it. The prescribe me different kind of ICS. Sometimes I used only Salbutamol (Ventoline). Every drug has its side effects. ICS inhalers suppress adrenal gland hormones and related to its failure. Antidepressant drugs make patient more depressed and change the person. More than a year I do no use any kind of ICS or other drugs for asthma. I am healthy because I can do hard gym exercises and to build my muscles, to run, to cycling, to swim, to training a martial art – Aikido. I have no any kind of asthma symptoms. I found the way to cure successfully my asthma. So, I am ready to give some advises to help for you and every person with asthma somewhere on the world. My story is so long and I write a book about it. I share my advises in the pages and I believe that I can help for everyone suffered from asthma.

Sometimes I wonder about these sort of people and where they get their ideas from. No matter how frustrated I have got with my asthma care team there has never been a moment when I have thought I can just stop taking my medications and start going to the gym and I would be cured. Im sure everyone would love it if this was such a simple thing and everyone with asthma can be cured. It would save the NHS a lot of money for one thing.

Don’t get me wrong sometimes with asthma it can be so complex that patients do end up on a bit of a polypharmacy and you don’t know what is doing what so a regular medication review is always a good thing, but when managing asthma there is always the need for inhaled medication at some-point and I guess if the medication is not working then is it time for more investigation to see what is really going on.

It is a worry because this comment is not isolated. There are so many that crop up like that. Thankfully I have my comments to approve or reject so don’t show them as I worry who will read them and do what they suggest.

I wonder that those who leave such comments if they actually had asthma in the first place and are one of those in the statistics that were misdiagnosed and maybe had viral induced wheeze or cough.

I think my message is that if there is ever any doubt in your asthma, symptoms, medications please discuss it with your Dr or team and do not just stop things. This is dangerous. There is no doubt that exercise is really good for asthma and ensuring your lungs are expanding etc but for some exercise is dangerous and can exacerbate an attack.

Everything in moderation is the key to success.

Allergy Awareness for invited guests!!

QbMuE3QqTzyZhgs%nM6ZeQ.jpgYou may think why is there a picture opening this blog post. Believe it or not for this allergy sufferer (that’s me!!!)  I was given this as an allergy friendly alternative to the cake which was provided for the coffee break at a conference. I had gone over to ask if the cake was nut free but they couldn’t not guarantee this so they had provided Nakd bars as alternative. All I can say is thank goodness I did not take them at their word and also that I can read as the staple for these bars is nuts!!!

Since my asthma has become more unstable and through a series of complex testing which did result in going to intensive care once we discovered the aspirin allergy I have was not going to be reversed with desensitisation. In fact since that desensitisation I have found I have become even more sensitive to it and now have to be salicylate free (a compound of aspirin that naturally occurs in just about everything from fruit and veg to toothpaste). My main issues though are nuts, tomatoes, herbs, spices and chilli type stuff.

I guess I have had a bit of a bad run of luck recently when at events. 4 different speaking events in a row I was left hungry. Being hungry is not too much of a problem although one person I was in London with did complain that I was getting very grumpy as it was pushing 12 hours since I had breakfast and I think she was desperate to get food in me!!

When I am invited to speak at events one of the first things I check is how long the event is and if there are meals or a buffet etc. As I know allergies are a total faff, it drives me round the bend I am more than happy to bring my own food with me, especially if it is a buffet then it doesn’t look as strange when I pull out my own packed piece- I get strange looks if its a sit down meal and do this!!! If meals are provided I will always tell them in advance about my allergies and often ask what they have planned and I will say yes or no. I appear as a fussy eater but actually the one and only food I do not like and can almost say I hate is the potato (thankfully I am allergic to potato skin due to salicylic acid in it).

Recently  however at these 4 events which were all held by different companies and services I think I have had the worst experience possible. It has highlighted as well how little anyone actually understands food and food allergies- particularly those serving food.

The second of the 4 was in London and just after the teenager died from eating a sandwich from Pret and had an anaphylactic reaction. I would have thought there would be a heightened awareness of food and allergies particularly when they have been pre-warned.

A common theme that I have found is that those serving the food have no idea what it is they are serving. I will always ask what is in something when given it unless I have cooked it or have seen it being cooked. On these occasions no one could tell me what was in the dish they were serving, but they also were not for volunteering to find out what was in the dish which really irked me. I did say I was asking due to allergy which is why I needed to know but they seemed like robots just dishing plates out and not actually caring about what they are doing. I liken it to my job. If I am asked to give something to a patient I will ask what it is- I am talking about their meals not drugs here as can not imagine putting something down in front of someone not knowing what it was.

The major major thing though that is not excusable on any level and no matter how anyone tries to wiggle out of it there is no excuse possible especially in the food industry and it has happened at 3 out of the 4 events I was at. I will break it down into different parts first the menu, then the alternatives, then the guess work.

The Menu. Why now in the modern world do we insist on being minimalist on the menu. one event I was at had a menu which read something like this: baked cod, butter sauce with peas, plain boiled rice and mixed veg. When I looked into the serving dishes the cod was sitting there with peas but also samphire and some other green stuff and also had some sort of spice in it, the plain boiled rice was also not plain it had mixed hers through it and the mixed veg was more like a ratatouille (which I guess is mixed veg). I asked the man in charge of the food what was in the dishes and he directed me to the menu and said it was written there. Of course I asked where on the menu did it have the added extras that were clearly there but he could not give me an answer but did say several times I could have the plain rice. I wanted to shout that it was not plain rice it had stuff in it!!! That was the event where I didnt get to eat as I asked if there was somewhere close by to grab something to eat but was told no and that was it.

The alternatives. As I said above if your giving an allergy alternative make sure it is suitable. Part of me sometimes thinks maybe I should take them at their word and eat the “safe” alternative that they have provided- however due to the potentially catastrophic effects I never would as I value my life too much. I wouldn’t choose to look like this 4 days after having an allergic reaction.

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The guess work. I have had experience of this from servers, waiters, to catering managers. One event I asked the catering manager what was in what on the buffet as it was not clearly labelled and they just sort of waved at a variety of things one being satay chicken- errrr no. I did after that event get a very apologetic email from the person organising the event because they had specified my allergies and I should have had a separate plate prepared. So often though people say you should be ok with this- but should be is not good enough when it comes to allergies. I would prefer someone to say I don’t know but I can see if there is something else or even they don’t know but they don’t have anything else. Just be honest. The same occurred with biscuits at a coffee break when I was told the biscuits were fine for me to eat yet I broke in to one and there were whole nuts in it!!

I think what irritated me to most about all of these events was that I had volunteered to bring my own food but was told no and that my allergies would be catered for yet they were not. I could have been really annoying and made a huge fuss about it but I didnt. However as it happens more and more I am getting really irritated especially as there is so much in the press just now about allergies and people who have died as a result of mislabelled food or unlabelled food.

I also think I have been the invited guest to these events. I am giving up my time to come and speak to sometimes hundreds of people about living with severe asthma and allergies or patient and public involvement, I also travel to the other end of the country yet when it comes to making sure you are fed and watered it really does go by the wayside. After a few of the events I have had emails apologising for the lack of food options etc however it has never been from the caterers who really are the ones to blame. I guess because they got paid their buck they don’t care- I bet if the money was to be withheld they may take more note. Alternatively I could name and shame but I won’t be doing that as prefer education as an option. If it was to happen again with the same caterers then it would be time to step it up.

 

Trauma of ICU

Finally I am able to sit down without getting upset or terrifying myself about my latest hospital admission specifically experience in ICU. The photo below may not look like much and you may think its a window and building but this is what has caused me to much trauma.

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Before anyone reads on please note this is just my feelings from it and my experience. The staff: nurses, support workers, physios and Dr’s were all fantastic and could not do anymore to help me.

This admission has rocked me so much. A lot more than any other has and I hope that I won’t ever get like this again.

There was a series of events I think which led to it all becoming too much once I got back to the ward and I guess basically I just broke down with fear that my asthma will kill me.

The lead up to being admitted was really rapid, as I said in my previous post where I spoke about the admission and how it went broadly speaking. What I didnt speak about was the true mental toll it took on me.

As with any trip to ICU in the back of your mind you know its not good because ICU is the end of the road in terms of hospital care you cant get any more treatment beyond what they an offer. I have been to ICU so many times, I cant even count the number of times I have been admitted there and come out the other end.

Once up in ICU there was the usual battle of trying to get a arterial line in which again failed and we decided to stop short of a cut down thank goodness as this caused me to lose the feeling in my left thumb and part of palm. High flow oxygen running various IV infusions and I had this feeling of being safe. I was in ICU and would be ok. Next came review from the consultant who said if things did settle next step is being intubated and ventilated.  I have had the said to me several times so I didnt think much more about it.

It was not until I came back to the respiratory ward that mentally I really found it tough. After starting to feel much better and access being an issue I was keen to be weaned off some of the infusions I was on. This didnt go to plan and a few hours after I really didnt feel to great so I let them know. Junior drs came to review and were concerned. It was late on in the day and about 7pm my own consultant came round to review me- that in itself freaked me as he was not even on the ward team but he came through. He wanted everything put back to the previous doses, have a whole load of nebulisers and be moved to the high care bay for close observations.

It was the move to the high care bay that brought so much flooding back and I felt that I just couldn’t cope at all. I have been in the high care bay before and never had any issues. I already felt quite on edge because by this point I had been seen by 2 consultants out of hours who came to listen to my chest and see how I was, have all my medications increased again and being moved. The move was what was enough to tip me over the edge. Once moved and settled I looked up and out the window and could see the ICU. The photo from above is below and I have marked where the ICU is.

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The combination of what the consultant said in ICU, and then getting worse on the ward and having consultants review me when they would not normally see you come in to review you and then seeing ICU again and the Dr’s talking about taking you back there was just too much. I think it was also because on the ward I was on the maximum treatment for my chest and just not getting better. The consultant was worried because I had been given 36mg of salbutamol via nebulisers with little effect. Thankfully they kept persevering and my airways did slowly start to open and breathing became easier.

Its fine when you are acutely unwell and everyone is buzzing around you making sure your ok, listening to your chest, giving you nebulisers, doing your observations you dont get much time to think or worry about not being able to breathe. Its once your that bit better and left alone and normally left with the parting words- “rest and try to get some sleep” and the lights go out. That is when it hits you. Still feeling not great and still finding breathing a real challenge sleep is the last thing you are able to do. Its a very strange feeling when you are so exhausted you want to sleep but scared to sleep at the same time. Being in the dark makes everything much worse and I just got so scared. I couldn’t help but break down. I was able to speak to a nurse but they could not offer much as its not like there is a magic pill that makes fear go away and because of my chest not being great they cant give you anything to help you sleep. At night with less staff around at night they don’t have the time to stop and speak to you and make sure your ok. but at that time it was all I wanted. They did then send a nurse practitioner up who was great but even he said that the psychological support at night was awful and as nurses we are not good at dealing with things unless numbers tell us something.

Over the course of that night as my chest came and went some nurses kept coming and saying to me all my numbers were looking better so I am doing ok. I think this is one of the statements I hate more than anything. I don’t care that my numbers may be ok or better I still feel like crap and having good numbers does not help with the crippling fear I am experiencing.

Once morning finally came around I felt really stupid for getting so upset but was able to have a chat with the Dr about it. I knew it was a vicious cycle of being upset, makes my breathing worse, which makes me more upset as I get scared it means going back to ICU but it is so hard to get out of that cycle.

The fear of what happened is still plaguing me. More so than normal. I can rationalise going to ICU and the need for their help but this time is just different and I cant get it all out my head.

I am a week out of hospital now and really feel like I am no further forward than I was day 1 post discharge. Everything feels just as hard. I have no idea why. Part of me wonders is it because of the biologic therapy that is making it harder to recover or has this all taken a much larger toll on me than I expected.

I have clinic next week and I hope to go through everything with my consultant and make sense of it all. I also hope he will have a reason for me feeling so rubbish despite being home from hospital.

I think this whole thing has just highlighted that no matter how many asthma attacks you have, or how many hospital admissions you never know when you will hit breaking point or when you just cant keep fighting.

Bumps in the road.

I only have myself to blame. Turning up to respiratory for my mepolizumab injection feeling great. My asthma felt good, I had a bit of a head cold which I told the nurses about but otherwise I couldn’t complain. I was really pleased with how the new medication regime was going and the nurses were happy with me to.

This was all very short lived. The following day was the start of the slippery slope downhill. As the day went on, what was a head cold was now in my throat and moving to my chest. My plan was to call the next day and get some antibiotics from the GP.

5am the next morning I had a raging temperature, couldn’t breathe and was sick due to the amount of mucus I had in my chest. I for sure had a chest infection and no longer a head cold. It was now a wait till 8am to call the Dr and not to get antibiotics but to be seen and perhaps go to the hospital. Till then I sat tight, trying not to move and get some nebulisers in me to make y breathing easier.

(Many will read this and think I should have gone to hospital when I woke up and was struggling not wait to see the GP. I waited because going at that time would mean going to the hospital where my respiratory team are not based. Had I been really really struggling I would of course gone and not waited.)

My GP surgery is fantastic and know me fairly well so I can often do things over the phone without being seen. I saw the nurse practitioner who also used to be a nurse in the  emergency department so used to dealing with asthma. I saw the nurse and he said I needed to go to hospital and I agreed with him. The part I didn’t agree with was the need for an ambulance. A call went in to my respiratory team and they were happy for me to go to hospital and be reviewed. I did this but got the ambulance cancelled as I could drive myself there.

The rest of it did not go to plan.

Once arriving at the hospital I was puffed so once checking in the receptionist wheeled me in. The nurse did my obs and then ran out to get the Dr as my heart rate was 170, blood pressure through the roof and oxygen saturations were fairly low. This all meant I was moved from an observation bay to the resuscitation room where they pumped me full of everything while we waited for resp to come and see me. They came down and the nurse who does my injection was also there and said she couldn’t get over the difference in just a few days. It is also really reassuring to see people you know when you are terrified because you can’t breathe.

Things did stabilise after a lot of nebulisers, magnesium, hydrocortisone etc and I could go back to the observation bay. I had such a great Dr who I wish there was a way to thank because she really did make sure I was ok. Every now and then she would put her head in and check I was ok or call me from the desk. It helps that she has looked after me before and knows what my asthma is like and how I can go off very quickly. Unfortunately this is what happened. I am not sure of the details but what sticks in my head is being so tired, the effort of speaking, keeping my eyes open even breathing was too much. I was reviewed again by respiratory who kept saying ‘what is wrong, why are you tired’. I had no answers to this I was just tired and couldn’t think straight.

Being tired, and not thinking straight with asthma is not a good combination. It was no surprise that the Drs from ICU came down to see me and stayed down with me until the bed was ready in ICU. At that point I really didnt care, I just wanted to find it easier to breathe- they could do whatever they want I would agree to.

The rest of the admission went by. Being moved from ICU to the respiratory ward and then home.

It was while on the respiratory ward that things changed a bit and I really started to struggle. I will write about it in a separate post as it is important and more awareness needs to be shared about it.

I am so frustrated that a head cold, went to my chest so quickly and despite the new medication I still ended up in ICU. I have to remember what one of my previous consultants said before he retired. He said I have the type of asthma that no matter what medication or discoveries they make I will always need the hospital now and then so need to accept it. It is so hard to accept that hospital will always be part of my life no matter what.

Right now it is focus on recovering and getting my strength back as it has really taken its toll on me. I always know when things have been tough because reading, watching TV even writing are too much. Even just writing this has taken me a heck of a long time and has been done in several sittings.

There are a few different areas to discuss as a result of this admission which I will write about in the next coming days.

Conference Season

This past month has been super busy and now I feel like my batteries are on empty or even below empty if they can go that low!

Along with work and lacrosse research seems to have been playing a massive role and there has been so much to do.

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The first big event over the last wee while was the NHS Research Scotland Conference held in Perth Concert Hall. I was giving the plenary along with 2 others. We all spoke about our story with asthma over the last 70 plus years both before and with the NHS. I will write it up properly as the talk I found to be really interesting even though I was part of it the other 2 speakers had such interesting stories about asthma care and its evolution. The best part about the conference was the number of patient and public involvement volunteers that were present. Compared to the previous year’s conference which was focusing on “Patients at the heart of research” and I was the only patient present- or the only person there in a patient capacity and being involved in research as a lay person (I am aware that everyone can be a patient and everyone could do PPI but everyone else was there in a research capacity which I wasn’t). I did write a blog post about it and how I was the only patient present etc. I expressed that it would be great if more PPI volunteers could be there in future as they are vital to good research and beneficial research. So this year 2 volunteers and Allison our PPI advisor spoke at the Plenary and then there were PPI volunteers on each of the panel discussions and final discussions. This was great to see. We also had a PPI stand where researchers, PPI volunteers or anyone could come and speak to us about PPI, how to involve people in research etc. This was really popular and so glad I suggested it and it came out good.

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Other than some small research projects the other big event I was at was the International Perspectives of Patient and Public Involvement in Research Conference. I was presenting at this twice one with other PPI volunteers and the other with one the PPI advisor from the Edinburgh Clinical Research Facility in Edinburgh. The event was in Newcastle and it was interesting, a learning experience for sure and has really opened my eyes to some things. I have quite a few blog topics to write up on the back of this conference due to various issues that arose including being given a Naked Bar as an alternative snack because they were not sure if the cake, which was provided to go with coffee, had nuts in it or not. It is really serious that they thought this was ok to give me a naked bar but what they failed to do or check was if they were nut free. They are not. They are basically made from nuts. The organisers should count themselves lucky because had I been illiterate and took them at their word and ate  said bar I would have certainly ended up in hospital as a result. It would have been their fault. This is just one of a number of events and blog topics which will be coming.

For now I just need to rest and regain my energy and concentrate on me for a little bit. Normal service will be resumed soon and more blog posts will be coming with full write ups of what has been happening.

Early night and lazy morning is on the cards and then off to the hospital tomorrow for review with the asthma nurses and getting my 4th Mepolizumab injection.

The Verdict!!

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I have been fairly quiet recently mainly because I was terrified. I have had 3 doses of Mepolizumab and was due to attend clinic and see my consultant for the verdict and find out if I am staying on it or not.

The good news is that I am staying on it for now.

Clinic went well. I am so glad that I had that horrific hospital admission that made me decide to change consultant because it has been the best thing I have ever done. It has come with some issues but overall it has been one of the best things I have done.

I had lung function and FeNo both of which were marginally better but what I have noticed is that I am more stable overall. Recording my peak flow has been super helpful and I can identify what causes were when they dropped whereas before I had no idea and it was all over the place. I would love my peak flow to increase but I am happy for stability over gains (gains are unlikely due to the fibrosis in my lungs now).

The other difference this consultant has decided on is with regard to my steroids. Previously it has been a rush to get me down to the lowest dose possible and see how I go but that has always ended up badly and I spend more time on higher doses and it felt like I was on a rollercoaster all the time. Now, as much as we want to get me down to a reasonable dose and hopefully off prednisolone (wish me luck) we are acknowledging what has happened in the past and he kept me on 20mg which felt like ages (3 months) and then alternating 20mg and 15mg daily (2 months) and now I am to stay on 15mg until February March time and then we will readdress reducing it further.

So many people have asked me if I think the mepolizumab is helping. It is so hard to stay. I think it must be as I have been more stable but I worry that this is due to the prolonged prednisolone and super slow reduction but what I am hoping that it is a combination of both. I guess the time to tell what is doing what is if I get unwell (touch wood I don’t) and I can see how quickly I can respond to treatment and not need invasive treatment. I am aiming for this as know hospital is going to happen as my consultant has said this. He said he would have no worries about admitting me to hospital if either he or myself thought my asthma was not great.

We are also changing one of my inhalers. For the first time in as long as I can remember I had an outpatient clinic where my medications were reviewed and we looked at what I needed to keep taking and what could get binned. The only change he wants to make just now is removing the seretide inhaler and replacing it with Relvar a newer once daily preventer inhaler. He wants me to continue taking some extra fluticasone at night to tide me over as I still have quite significant dips in my breathing at night.

Im happy I now have a plan. Know roughly what is happening with my asthma and asthma care. Over the winter period I will be seen every 2 weeks. Monthly clinics with my consultant and then in-between I will be up with the asthma nurse specialists getting my injection and review there. Also should there be an issue I just have to call in.

The one thing out of all of this which I cannot let go of is why did it take throwing my toys out the pram and move consultants to be able to get in control of my asthma or have a plan to get control of it. I just want answers and I know I won’t get them but I am now trying the treatments I have been asking about for a good number of years. I know dwelling on it won’t help but when its your life that has been suffering it is hard.