Olivia is an active blogger on Anonymous Asthma and you will be seeing a couple of guest blogs from her on here, so here is your chance to meet the lady behind the posts…..
Olivia Fulton – Who am I?
31, Female and from Edinburgh, Scotland.
She is single with no children or pets.
What I have…..
I was diagnosed with asthma aged 2, which gradually became more out of control from age 14. I was diagnosed with Brittle Asthma when I was 18 after getting a strange strain of pneumonia in both lungs which caused a lot of damage. Since then my lungs have gradually got worse and now have bronchiectasis as well.
I also have multiple allergies particularly to salicylic acid which is a compound of aspirin which naturally occurs in fruit and vegetables etc. I have the following as a result of long term steroids: unspecified tachycardia, osteopenia, adrenal suppression, restless leg syndrome, optic nerve neuritis and GERD.
We have a family history of Asthma and one of my brothers has asthma, but it is well controlled. My granny has severe asthma, her brother died of asthma as did her father.
My father and another brother both have allergies and eczema, my mum has hayfever.
How do I manage it?????
I am under the Edinburgh Royal Infirmary who are a specialist center for difficult to control asthma. Dr Bradshaw is my consultant but I will see other consultants when admitted as an emergency.
The medications I take to keep everything under control are:
- Seretide 500 2puffs BD,
- Flixotide 500 2puffs BD,
- Salbutamol Inhaler,
- Salbutamol 5mg Nebs QDS + PRN,
- Atrovent 500mcg Nebs QDS, Saline Nebs QDS,
- Avamys Spray 27.5mg BD,
- Sterimar Nasel Wash BD,
- Prednisilone (maintenance 15mg),
- theophylline (uniphyllin) 300mg AM 400mg PM,
- Montelukast 10mg Noct,
- Fexofenadine 180mg OD,
- Chlorphenamine 4mg QDS + PRN,
- Ranitadine 150mg BD,
- Lanzoprazole 30mg BD,
- Cyclizine 50mg TDS,
- Calci Chew D3 Forte BD,
- Alendronic Acid 70mg 1/52,
- Co-Codamol 30/500mg x2 QDS,
- Sertraline 50mg OD,
- Amitriptyline 30mg Noct,
- Oromorph 5mg (2 hourly),
- Lidocaine patch 12hours,
- Depo Provera Injection 3/12,
- Lactulose 10mls PRN,
- Doxycycline 100mg OD.
When in hospital I tend to have IV hydrocortisone, IV Magnesium, IV aminophylline and IV Salbutamol. I used to rotate antibiotics for their anti-inflammatory properties. I also used to be on a Terbutaline Infusion 24/7 for 3 years which worked well but was not allowed it in Scotland. I also get Methylprednisilone 500mg for 3 days.
The worst side effects are from the long term prednisolone but the benefits to my chest out weight the side effects so I take tablets to protect my bones, stomach, anti emetics. I get a bad tremor from the amount of salbutamol I use and the theophylline contributes to this to. I suffer really badly from insomnia but not able to take anything for this as it may suppress my breathing.
I have a few different nebulisers. I use a Pari E Flow which I got through the hospital up here. It tends to be used in CF as it is very powerful and quick but also silent. To buy they cost about £500. Thankfully the hospital funds mine.
I also have a Pari Velox portable nebuliser which I use when I am out and about and at work. For back up I have the Pari Turbo Boy Nebuliser. I also use a PEP device and acapella for chest physio and mucus clearance. I have a standard peak flow meter and also have a Piko6 FEV machine to monitor my lung function which I was given by a researcher.
All those conditions, medications, how does it effect my life?
It effects all aspects of my life and has really changed my life. I used to play sport and planned on having a career in sport, now I cant play any sport due to my asthma. I am also the assistant manager for the Scotland Lacrosse Team where I had hoped to become the manager but am not able to as I am not well enough anymore.
I work as a nurse however that too is hanging in the balance. I am no longer able to work on the wards and have an office based job. I have gradually been having to reduce my hours at work and now only work 20 instead of 37.5 which I once worked.
I find now I need to plan everything I want to do and make sure I have rests and that I have the right medication with me, make sure I know where the nearest hospital is, try and plan for potential triggers.
I sometimes find it easier to just not do something rather than get my hopes up to do something find I am not well enough and have to cancel.
How do your friends and family cope?
Some of my family are really understanding and help me out a lot to make sure I’m ok however other members of my family are not. They think if I was fit enough I would cure my asthma so need to go to the gym and also some members just think I am making a fuss about nothing when I am not. My mum understand the best as does my best friend but I find I get really lonely because other friends get on with their life and sort of forget about me or get fed up of me not turning up to things because I am ill.
I finished school and went to university to do a Sports Science degree. I had to complete that via long distance learning over 4 years and never managed to do my dissertation due to my health. I then studied Nursing and completed it. I work as a nurse however the amount of nursing I am now able to do is very much restricted due to my health. I worked on the ward but ended up looking worse than the patients did, so was moved to a home dialysis role seeing patients in their own home however I cant do that now as its too high risk and I may have an attack in the patients house so I have to stay based in the hospital seeing patients here. I do more education based work now.
Being honest from the start. Tell your employer exactly what your asthma is like. I always have from the start and they have been supportive because I do try my best and will only be off work if I have a bad attack and end up in hospital. I also gave occupational health and my bosses the option of speaking to my respiratory team if they wanted to get a better understanding of my asthma and how they can make it easier for me. I would also always have a back up plan. Just now I know I wont be nursing for much longer so I have started thinking about things I can do should I end up losing my job.
Do you get benefits or help of any kind?
I always resisted applying for anything as this was me acknowledging just how bad my asthma was. I did apply for my blue badge first and when I was awarded it I used it for about a year before I thought about applying for PIP. I then applied for it when I was at risk of losing my job and needed some extra help. I found the whole process very easy. I was honest with what I could and couldn’t do which was reflected in the award letter when the assessor said the evidence they received from medical team, matched what I had written in the form which matched what the assessor observed when I was assessed.
- My number 1 is having audiobooks on my ipod and a good set of headphones. Listening to something takes you mind off what is going on and passes the time of day. Good headphones will block all the noises out from the ward!
- comfy PJ’s- cant beat loose fitting comfy jammies.
- some mints to take the horrible taste of hospital water away.
- try and get up and out of bed. It will make you feel more human even if you just end up sitting on top if your bed again.
- have tasty snacks. Pred is going to make you hungry but hospital food is not satisfying!
What advice would I give someone else…
No ones asthma is the same we all experience things differently and just because one person gets one treatment doesn’t mean yours is not as bad or worse than the next person. It is always about the worst we as individuals have experienced not what others have experienced. Be honest about your asthma. Its ok to say your scared, its ok to admit you didn’t take your meds, its ok to perhaps have done something you shouldn’t have done which caused you to have an attack. None of us are perfect and that’s ok.
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