Whats your reality??

The other day I picked up my medication from the pharmacy and laughed when the handed me over a shopping back but then went back for another one!!! I know all the people in my pharmacy well and will always have a chat with them but I have never really told them whats wrong with me. They know I have asthma but they don’t know much about it etc, until the other day when I hadn’t been in for a while. I collect my dosette box weekly from them and will get a top up of inhalers etc every so often. She asked where I had been so I told her I had been in hospital and thats hy hadn’t been in. She was shocked. She said she didnt realise just asthma could do that to someone. I went on to explain a bit more about it and how it impacts me and explained what all the meds I take are for. She said she ha wondered as didnt think asthma could be like that. She said it must be hard but its life. Life for everyone is hard at times but it is what you make out of it.

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I have days where I really resent having asthma and wish I could go back to primary school I think P3 was when I was on just one preventer and a reliever and that was it. That would be wonderful but then what would I have achieved in life if I didnt have the difficult asthma. I am sure I would be proud of my life but Im not sure I would have done nearly half of what I have done and a lot of it is because of my asthma such as publishing an article in the BMJ, playing for Scotland in the Home Internationals, be back as a goal keeper in lacrosse, speaking at so many events, speaking on a masters course at Edinburgh Uni, being a nurse, being development director for Lacrosse Scotland, being a PPI lead for AUKCAR, being a RaP volunteer at Asthma UK. None of these things I would have done and I also would not have met some fantastic people on my way and made some great friends. I am thankful for my asthma to have given me these oppeturnities inspire of also giving me some of the hardest times in my life and living with the fear that it could kill me one day. (but then as my mum says you could cross the road and get knocked down by a bus so you never know what is runs the corner!!!!

I would love for a day when my breathing is a little less challenging and a little less limiting but I think in a small way I am glad it has shaped me the way it has.

The reason I wrote this out was because I just picked up my meds as I wrote in the start and I organised them into my cupboard to make them all neat and so I know what is where. I was getting lost with the meds and what I was taking when. It was over whelming but my pharmacist has reduced that a lot by sorting my meds out weekly but they were also all in a box just chucked in so never knew what I had and what I was running out of. Now they are neat in a cupboard which I can close the door on. Closing the door- after some carful tetris packing because it wouldn’t shut the first time round, made me think about what we hide from the outside. What is our own reality and what is the reality that we allow people to see. My life on the outside is very different to life in my flat. I find when I am at home I am resting and doing treatment to allow myself to go out and about and be with friends or coach or something else. It is like two polar worlds- one which is in preparation of going out or the recovery of being out and then the being out and doing things. Its keep the private and the public separate until you read this and realise that asthma is not just asthma but it is much bigger. It is life changing, life threatening, life limiting.

 

But take each day as it comes and rise to the challenges that are thrown at you and achieve what you dream of achieving as it is always possible it just has to be achieved in different ways with some imagination sometimes. For instance I always wanted to play lacrosse for Scotland but never did I think it would be achieved by being in the goal, I thought if it was to happen it would be playing out field.

Good things come to those who wait.

Life is for living not watching it go by in front of you!

 

Dreams are perhaps coming true!

For the longest time I have been willing for the day when I really feel like I am starting to get better and have my life back. I guess just going back to the “normal” me.

I always thought they day would come when a cure for asthma was found or my consultant tried a different medication and it worked wonders reducing my asthma symptoms and allowing me to play sport and do all I wanted to do again.

But things never happen as you think they will do they???

Over the past few months I have noticed a difference. A difference I couldn’t put my finger on but something had changed. My breathing seemed more controlled, I didnt feel I was always using my inhaler and I felt less tired even though I still am not sleeping well my body doesn’t feel so fatigued. I have been feeling this way a while but because of how the last years have gone I didnt want to jinks myself incase it was just false hope.

I have been willing my asthma to stay stable and been working so hard to maintain control so many ties over the years but had started to think that the day would never come. I really do think the day is perhaps coming where I am turning the corner and getting better. It is a surreal experience but one I am not taking for granted. Part of me has a fear that this is not going to last and I am jumping the gun so I am not celebrating too much just yet and not pushing myself to do all the things I want to!

It has been a long time coming. Just about 14 years since things started going a little off track, but 11 years since they really took a turn for the worse. There is a theory with asthma about the 7 year cycle. After 7 years it never really got much better but it is 14 years now so I am wondering about a 14 year cycle instead!!!

Im not complaining that things have got better but in some way it feel like an anticlimax. Sounds very odd for me to say but after all the medication, all the hospital admissions I was expecting some miraculous medication to fix things rather than it just to get better on its own. Don’t get me wrong I am over the moon that I have got a lot more control now!

The one thing that I think has made a big difference is the multidisciplinary approach to my care. My consultant has been really good at working with me and reducing my prednisilone something I never thought we would actually achieve but we have. Seeing a psychologist is also really helpful with working through the asthma and its impact on life.

I would love to think that this is it. That my asthma is now on the up and will only go up but I need to be real. It is not as bad as it was but to think I will never end up in hospital again is unrealistic. It would be great but if I was to think I won’t need to go again and I do need the hospital it would be a massive blow, so acknowledging that I might need to go is just keeping it real.

So what has changed??

I don’t know. I am on the same medication, Im doing the same things, Im still following my diet so I cannot pin point any one thing that has made a difference. A combination of looking after myself better, a really good regime with my medication and never missing a dose have probably played a big part in it. I have also mentally changed my outlook to look at the positives rather than focus on what I cannot do but rather what I can do and what I have achieved.

I have decided that once I have a prolonged period of stability for the next month or so then I will really start to increase my exercise and get back some of my fitness again as I am really missing it.

I have no idea if this is it or if this is just a short burst of good health but I a going to grab it with both hands and make the most out of it (within reason I don’t want to push the boundary and trigger an attack!).

What I take and what it all does!

Part of having Brittle Asthma means quite a strict daily medication regime but also the constant quest for the magic inhaler, pill or nebuliser which might just be life changing or not even life changing but give you that bit more freedom and better quality of life.

A common theme between brittle asthmatics when first meeting someone is to ask about what medications they take. Not to be nosy but for that inhaler they take that you might not have tried or something different which might help!!! I have a page where it has my medication but I thought I would do a post about the regime I follow and why I do this and what the point of each medication is.

During a normal day I have four medication sessions so to speak: breakfast, noon, dinner and before bed! As I take several medications more than once a day I am going to explain each medication after my regime.

Breakfast: Salbutamol and Atrovent Nebuliser and a saline nebuliser if needed. Seretide and Flixotide inhaler, Nasonex nasal spray, Prednisilone, Theophylline, Fexofenadine, Citirizine, Calci Chew D3, Lanzoprazole, Cyclizine, Nefopam, Co-Codamol, Laxido,

Noon: Salbutamol and Atrovent Nebuliser (if needed. I don’t always feel the need to take this set of nebulisers), cyclizine, nefopam and co-codamol.

Dinner: Salbutamol and Atrovent Nebuliser, Cyclizine, Co-Codamol, Lanzoprazole and Calci Chew D3

Before Bed: Salbutamol and Atrovent Nebuliser along with saline if needed, Seretide and Flixotide Inhaler, Nasonex nasal spray, Theophylline, Chlorophenamine, Co-Codamol, Nefopam, Amitriptyline and Montelukast

When my asthma is a bit better I substitute the atrovent nebulisers with a once a day inhaler tiotropium and my salbutamol nebulisers with salbutamol inhaler however I rarely don’t take salbutamol nebulisers except during the day when at work.

The nebulisers I take:

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I take Ventolin aka salbutamol in either 2.5mg or 5mg doses. Salbutamol is a short acting bronchodilator which helps to relax the smooth muscles in the airways which have constricted causing wheezing and the feeling of breathlessness. I also take Atrovent aka ipatropium in a 500mcg dose if I am not taking my tiotropium inhaler aka Spiriva. Both Atrovent and Spiriva are drugs commonly used in COPD but are becoming more common in the treatment of difficult asthma. It is an anticholinergeric drugs which blocks the muscarinic acetylcholine receptors in the smooth muscles and stops the bronchi from contracting due to inflammation.

I have two nebuliser devices depending on where I am. I have a mains powered nebuliser called a Pari Turbo Boy which is fantastic but not possible to use when out and about so I use a Beurer IH50 portable nebuliser which runs of batteries and much handier than needing to find a plug for the Pari!

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As well as the nebulisers I also take 2 different inhalers regularly and then a ventolin inhaler as and when I need it. The main 2 inhalers are known as preventers. The first is Seretide 500 2 puffs twice a day increased to 2 puffs 4 times a day when unwell, which is a combination inhaler made up of fluticasone and salmeterol. The fluticasone is an inhaled cortico steroid which dampens down the inflammation in the lining of the airways in the lungs. The inhaler works locally on the lungs and very little of the steroid component is actually absorbed in the circulating system. The salmeterol is a long acting bronchodilator which has a 12 hour working duration compared with the 4-6 hours of the salbutamol inhaler. I also take Flixotide 500 2 puffs twice a day can be increased to four times a day, aka fluticasone which is part of the Seretide inhaler. Due to the doses of inhaled steroid I need I was taking a higher dose of Seretide however was suffering with a lot of cramp due to the higher dose of the salmeterol so I have a second inhaler with only flixotide.

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Twice a day I use a nasal spray due to allergic rhinitis associated with my asthma. The nasal spray is Nasonex aka Mometasone which much like the inhaler is a steroid based medication which acts locally on the inflammation in my nose and sinuses.

Along with my nebulisers, inhalers and nasal sprays I also take numerous tablets.

The most important one is Prednisilone. This is a steroid tablet which again dampens down the inflammation in my lungs. The dose I take varies depending on how well my asthma is controlled. If I have an acute episode I will be given 40mg and then reduce as I see fit normally by 5mg every week down to my maintenance dose of 14mg. This drug is one I love to hate. It is really good for when my asthma is really bad but it does with some awful side effects which I need other medications to control. These are and anti emetic Cyclizine 25mg three times a day, a proton pump inhibitor which protects my stomach from too much acid called Lanzoprazole which I take 30mg twice a day, I also take Calci Chew D3 Forte twice a day which helps t protect my bones as one of the side effects from prednisilone is bone thinning. The D3 Forte part increases the vitamin D level in my blood which many asthmatics can lack. Prednisilone also gives me very bad restless legs which I take Amitriptyline 20mg at night as my restless legs are worse at night.

Other tablets specifically for my asthma are Theophylline (Uniphyllin) which is a slightly old style drug which requires close monitoring as you need to adjust the dose to get a therapuetic dose. Too much can make you toxic and very unwell and subtherapuetic will result in less asthma control. I take 300mg twice a day as it is a modified release tablet and taken every 12hours to maintain your blood serum level. It is difficult to explain how it works. It also has some adverse side effects which I take the above tablets for. Another one is Montelukast (Singulair) which is leukotriene receptor antagonist. It works by blocking a substance called leukotriene, which helps to decrease certain asthma and allergy symptoms.

A big part of my asthma is allergies associated with it and hay fever. I take three different anti histamines. Fexofenadine (Telfast) 180mg once a day in the morning, Citirizine 10mg once a day and at night I take Chlorophenamine 4mg. I take this at night as it has a bit of a sedating effect which is not good during the day.

I also take painkillers everyday at the lowest dose possible although this has to get increased when I am struggling with my chest. I get a lot of pain in my lower left lung where I have had repeated infections and have a lot of muscular pain as well as previous cracked ribs. For this pain I take Nefopam 30mg three times a day. This can be increased up to 90mg three times a day but I don’t want to take a high dose. I also take CoCodamol. During the day I take Co-Codamol 8/500 x2 three ties a day as it can make me feel a bit dopey but at night I take 30/500 x2 at night. I need to take Macragol (Laxido) sachet either once or twice a day as co-codamol can cause you to become constipated.

Its quite a lot of medication. I m really lucky that i have a fantastic pharmacist who has set up a dosette box for me so I don’t need to have boxes and boxes of pills. I just collect a tray once a week from my chemist and it has all my pills in it ready for me!

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Every three months I have a Depo Provera Injections which maintains my hormones at a constant level as we worked out my periods made my asthma worse so by keeping hormones at a constant level this helped.

I regularly require antibiotics such as Amoxicillin or Doxycycline for chest infections and if presenting with an acute attack am given IV Magnesium, IV Hydrocortisone and IV Aminophylline or Salbutamol.

Just now I am at the end of my tether with my health and have asked my consultant in a desperate plea to see if I could try Methotrexate as a steroid sparing agent. I don’t care about the side effects I just want some life back. This medication is known as a steroid sparing drug which can help people come off prednisilone. I need to wait and see if she thinks this is a good idea or not. I need to do something as I can’t stay as I am.