Lynn Gardner – Who am I???
38 (although I feel a lot older)
London (UK) although I do travel a lot with work
I am single with no children or pets. Although I am often found snuggling other peoples.
What I have…..
I was diagnosed with Asthma as a child, which was always difficult to get under control, the diagnosis of Brittle Asthma then given with food intolerance’s. Generally I was pretty stable until 2012 when on a work trip I caught Mycoplasma, which pretty much reshaped the way my Asthma behaved. It took a long time to get it back under control and eventually with a cocktail of drugs it allowed me to have my life back. In July 2016 I had my first major attack in many years, which has shaped my life today. My Brittle Asthma has become so voliatlie I have a major attack every other week it seems (if not days apart), I am often in ITU and been ventilated more than I care to remember this year. I also have Obstructive Sleep Apnea, Anemia, Non-Alergic Perennial Rhinitis, Osteopenia, and PTSD.
I also have the added bonus of having food intolerance’s to Wheat, Gluten, Dairy, Eggs, Fish and Citrus which can be a nightmare at times, and allergies to Pollution, Grass Pollen, Horse, Aspergillus & House Dust Mite.
No one else in my family has a history of Asthma, so it was a bit of a shock dealing with mine.
How do I manage it?????
Well I have a local respiratory team at Hillingdon Hospital (London), who work really closely with my specialist team at the Royal Brompton (London). I go to most clinics there, including the Sleep Clinic for my OSA management, Speech and Language, Physio and ENT. Like most I am under the guidance of Menzies-Gow’s team.
I have a lot of medications, but my usual routine is:
Waking up: I have the first hit of medications before I get up. Starting with nebuliser of 2.5mg Salbutamol and 250mg of Ipatropium. Then I take 20mg of Omprezole, 5ml of Oramorph, 50mg of Cyclizine, 1000mg of paracetamol and 60mg of codine.
Breakfast: Avamys Nasal Spray, Fostair Inhaler, 350mg of Aminophylline Hydrate, various doses of Prednisolone (currently I am on 35mg), AdcalD3, 200mg of Ferrous Sulphate, 5ml of Oramorph
Mid Morning: a Sodium Chloride nebuliser and 5ml of Oramorph
Lunch: is another nebuliser of 2.5mg Salbutamol & 250mg of Ipatropium before my eyes are fully open. Then I take 200mg of Ferrous Sulphate 5ml of Oramorph, 1000mg of paracetamol and 60mg of codine
Mid Afternoon: a Sodium Chloride nebuliser, 5ml of Oramorph
Dinner: 180 mg of Fexofenadine Hydrochloride, 350mg Aminophylline Hydrate, 10mg Montelukast, 50mg of Cyclizine, 5ml of Oramorph and AdcalD3.
Pre-Bed: Fostair Inhaler, another nebuliser of 2.5mg Salbutamol & 250mg of Ipatropium, 5ml of Oramorph, , 1000mg of paracetamol and 60mg of codine and 30mg of Temzepam.
I have other bits I used to top up, like more Oramorph, often on an Antibiotic of some kind. I also often have to take the dreaded Sando-K….. but I avoid this as much as possible. I also have to use a special mouthwash each day to protect against all the oral steroids I take.
Generally I am used to the side effects, or take pills to deal with them. Most the time I have a bad headache and general aches and pains. The Oramorph can sometimes make me itchy and a little dosy. For me I think Prenisolone has the worst, the weight gain, munchies and permanent mood issues drive me crazy. I have at points got pretty low/down when on very high doses. It has also started to really effect my bones and we are trying to now switch it out.
I think because I have been on this for so long I generally don’t notice anymore, it gets me down sometimes that I have to take so much, they all seem to be in there to combat something else. Such as the anti-sickness and calcium replacement.
I have to use a wheelchair some days as walking is just too much, but I really try not to, I had an NHS one for a while, but now I have a smaller one which I purchased and just allows me to sometimes get out and about when I have been locked in for days.
I have to sleep on a cPAP machine, which takes some getting used to, but makes sure my airways are nicely open. I have one that was given to me by the Royal Brompton, which they monitor remotely and if needed can adjust the flows/settings. They also collate all the data from each night for my clinic appointments.
I have a couple of nebulisers as its easier sometimes to leave them at places I go to a lot, I bought these ones myself as the NHS one was so clunky. I tend to go for the Omrion ones as they are so easy to use. I have a battery powered one, which is really handy to keep in my handbag for an emergency, not so good for daily use.
I have to check my levels a lot and so I have a Blood Pressure Monitor, Sp02 gauge etc, I did have ones given to me at some point, but these have since been replaced by ones I buy myself.
All those conditions, medications, how does it effect my life?
I guess you learn to adapt, you have a routine which means you do most of it on autopilot. Day trips are the hardest ones, you have to make sure you pack all your medications and equipment to be able to take them. Its never just a get up and go thing.
Holidays and work trips mean making sure all the paperwork is in place, insurance will cover you, that you have all your medications.
Having to live like that makes you totally more organised, you have to be,
I don’t have a lot of limitations except when there is a flare up, like for instance I can’t go out at the moment unless someone comes with me, I am too unstable to be able to be alone for most of the day, so it starts to annoy you. Right now I can’t train in the gym like I used to, it would be too much for my body. I have started up some slow cardio but its annoying that it has stopped me doing something I love.
Generally the worst effect it has, is the amount of time I have to spend in hospital, that’s the bit that really gets me. Quite often breaks me as a person and I have some of my lowest points when in there. Its also hard to explain to people how somedays, even though you don’t look sick, you feel drained, you have to cancel plans, the air quality is too bad and so you can’t risk it. Not being able to be me all the time is what gets me.
How do your friends and family cope?
Well my close family pretty much deal with it in their stride. There is much they can do other than be there… and they are. They do endless trips to hospitals, keep everyone updated, sort out everything in the real world for me. We have grown up with disability in our family, my youngest brother has Downs Syndrome so we often went through the whole hospital ordeal. My Dad is going blind and has other health complications from Type 2 Diabetes and my Uncle has Lewy Body Dementia, so dealing with medications and hospitals is something they are used to.
I have a few different circles of friends, there are the Chronics who I spoke about yesterday who keep you going in other ways you cant explain. They are my rocks, totally get me without me needing to say anything.
There are mates I hang out with, they get it now, at first it was a little harder. They didn’t quite get it, would not know how walking 20 ft one day would floor me for hours when others I can walk miles. Now they are happy to go walking with a slow coach, even carry everything. They know sometimes I want to go out but they have to come and pick me up, help me get ready. My true mates are awesome and no matter what they are always there.
Then there all the other people in my life, some really don’t get it, mainly I think because you can’t see Brittle Asthma as a whole, you might see my out of breath or completing medications. They get a little annoyed if you have to cancel something last minute because you know that it would risk your health. I think the more and more I have blogged about it and spoken frank they are getting it,
I work pretty high up in the Sales Operations field in Information Technology, as a Sales Ops Manager for EMEA and APAC. Sounds pretty impressive right on paper, but it is mainly office work. The real hard part of my job is the travel sometimes, it can really take its toll on me, the hours sometimes needed are on occasion ok, some weeks I really really struggle, especially at the moment.
Our offices are all open plan and it can be quite hard, especially with cooking smells, the amount of dust, pollution and general office things that can cause issues especially when I am in a flare up. This means I tend to work from home a bit more than I like at the moment. It is too risky for me to commute to the office, then sit there all day and try and get back on the tube.
I would like to say my work has been supportive, in some ways they have, as a whole no, they have pretty much made it quite hard on days. It has really hit home sometimes how you really are just a number some places and how you have to ensure you document everything and fight for it. I am still working with the company to try and enable me to get into the office more and have more support, it is taking a long time and is very draining.
I think my biggest tip with dealing with work, is be open and honest. Do not sugar coat anything because they need to know your limitations. That way when you need to say no it isn’t a shock to them and/or they can help put things in place to help you and the company.
Do you get benefits or help of any kind?
I am in the process of the great PIP battle, in order to be eligible for certain other things like a carer’s card or help equipment you often need PIP. Which means trying to convince someone that you are sick enough. For me it isn’t about the payment, its about having that paper that will enable me to have my carer for the days I am in a wheelchair come in too.
I do get free transport in London which helps a lot, it means I can jump on and off the buses and tubes to save walking long distances. I also have blue badge parking which has helped a lot. Some days I can barely move or at a very high risk of an attack so knowing the car is nearby really helps, it also means extra emergency supplies can be packed into them.
I think its really important to get PIP in place and they make is very hard for you to get sometimes, especially with the non-visible illness. Ensuring your team is behind you and provides evidence is great, but it is a long battle.
My top 5 tips for surviving hospital are often mentioned but i think for me:
- Be prepared, have a small bag packed with your essentials so you don’t have to worry about someone finding you things in a hurry.
- Headphones and something to watch/listen to… hours on a noisy ward, you need something to pass the time and block the noise out.
- CASH… always have a little on you, be it for the vending machine, newspaper or some sweets, you never know you might be the ward with the hospital shop.
- Laugh.. find a reason every day to laugh at something, anything. The place is hard to deal with you need to find the rainbow in the rain.
- Say Hi.. when you get on a ward, make friends. You are all in there together might as well make some friends to help pass the time. I have made some amazing ones in hospital and it really does help turn a long day into a bearable day.
The worst thing I hear in hospital all the time is “it’s just a prick, it won’t hurt”. I think this annoys me because its like a programmed lie. It is normally in relation to a needle going into some part of your body, it is going to hurt. It seems like only a little thing, but it’s more a pet hate of mine than the worst I suppose.
What advice would I give someone else…
YOU GOT THIS…. no seriously that is my advice. Never forget that no matter what you will win at this because you got it. You know your own limits, you know how to push them, you know what is right for you. OWN IT. If something isn’t working speak up, don’t be afraid to question people, it is your body and you have a right to be in control.
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