For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive.

I started this blog to tell my story, about who I am and what I do. I live with 2 mental health problems as well as a disabling and sometimes painful physical problem. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

I am young, caring and a very smiley. I have a lot of wonderful people in my life and these keep me going through the best and worst of times. I live with Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Neutropenia and Osteoporosis. I live with these conditions, but I refuse to let them keep me down and out.

I went through hell due to bad diagnosis and poor clinical care, and I suffered a lot as a result. I do my blog to tell a story of hope and how a heart full of pain and sadness can find a beautiful light inside. I agreed with Cissnei in Crisis Core when she said that "Wings symbolise freedom for those who have none". I have always dreamed about having a pair of wings and being able to fly away from all of the things that hurt me in life. Sadly many times my wings were clipped or even pulled away and I was left with nothing.

I'll flap my broken wings and erase it all someday... You'll see.

Tuesday, 22 April 2014

I Keep Going...

Since my last admission, I have been slowly getting back to what is normal for me. The weirdest part for me is getting back in to my own sleep cycle which is very different to the regimented routine in hospital. At home, most days start around 11 when I wake up (although recently, I have been waking up around 8, hacking up rubbish off my chest and then curling back up and going to sleep). I then take my usual morning meds before going in to the living room, where usually Natt is up and about and we do whatever needs to be done. Some days that involves going out to town or other days it was staying in and doing whatever it is I do around the house.

I'm not once suggesting that I have an active or exciting life. Some days are generally spent vegged out in front of the TV (watching as Natt puts it, "visual chewing gum" the idea being that like when you get a piece of gum, you chew and chew in the same way that with daytime TV you stare and stare) or just generally pottering around my little place. I can't believe its been over 3 years since escaping from the drudgery of the YMCA and getting this place. I love this flat and knowing that I fought for it when it counted makes it feel all the more my own. We need a lick of paint and some new flooring here and there, but to be honest, I'm not in any big rush. You could take me to a palace and offer me a suite, but I would turn around and go back to my place any time.

I have had 6 admissions in the last year and we're finally starting to get something sorted again. I am under 2 consultants at the hospital and they're getting as many of the pieces together. The problem is that all we can do is manage what we have in the mean time. The last few times have brought about some changes to my medication, some meds added, others simply changed. I had some reservations about having certain medicines added to my roster, but now I am on them, I no longer worry about them. I think that watching someone become addicted to opiate pain killers frightened me a little because I was worried of going the same way, I have nothing to worry about and I am lucky to be getting the help I need. And with Jace, my family and friends around me, I have all the love and support I could ever need which has been the one thing that keeps me strong even though the things around me say "no". I refused to give up. I still do.

I don't know what the future has in store for me. Maybe I'll get better and never have to worry about being ill again, maybe I won't ever really get better. But the important thing is to keep up on hope and keep my head up, ride in my chair with style and pride and keep showing the world that nothing can keep me down or bogged under. I've been through too much now to let it all go to waste and go to pieces because of one thing or another. I guess the only way we can find out what is in store for us is to find out!

Wendy xx

Saturday, 19 April 2014

My Medication Passport.

Going in and out of hospital is a strange, scary state of affairs. The worst part is relinquishing that level of control you have over your own condition. Living with it for as long as I have had to, I have had to learn my own ways around it and ways to make it more tolerable. I was feeling really dejected and frankly discouraged last time I went in (and the time before) when I had to explain on several occasions what I was on, when and how much. As a result, my medication routines got completely jumbled up and it made some symptoms come back and others get worse. It's important that I get the right meds at the right time because of the conditions I have. 

After feeling that way, I mentioned on Facebook how I wish there was a way to make this process easier and a friend, Kim Beattie, pointed me in the direction of a free NHS project called "My Medication Passport". This is a booklet that is carried with the patient (or installed on an Android/iOS device) which has all their medical details, next of kin and a comprehensive list of what medications the patient is on and how much and when. It leaves NO ambiguity or guesswork. Its simple and shows the times when certain drugs are taken and the routine. 

I admit I was a little dubious at first. The amount of times I have heard horror stories of the hospital "forgetting" to give the patients vital medication despite comprehensive letters from the doctor or anyone else, even in some cases, medication for life threatening conditions had been forgotten or decided they weren't needed. It worries me that this can and does happen. I want to spread the word about the Medication Passport to as many people as I can and see if we can get it rolled out as far as possible (I have already set up contact between the discharge lounge/pharmacy team at the Alex and the large Lloyds Pharmacy with the people responsible for it and hope that they will be distributing them in future, particularly for patients who go in and out on a regular basis.) 

I just think that this is a great idea. If anyone is interested in the "Medication Passport" please contact me via my email or via Facebook and I would be happy to have one posted out to you. 

Wendy xx

Sunday, 23 March 2014

Medication Routines...

My medication routine probably takes up more of our time than anything else. I looked back on an old blog which had my old routine, and one thing I can't help but say is how much it has changed over the last few years. It is important that some drugs are given within the right time frame of each other and at the correct intervals. The aim is to maximise the effect, ensure that there is no pain and make sure that my breathing remains steady and easy. It starts every morning as soon as I wake up, usually around 10 or 11. I try and start the meds at 11 if possible because that way I know for sure that I am up and about. This is a typical layout of what I have to take and when. This is a window in to my life and what I have to do every single day, but please note, this is a treatment plan that has been set up by my consultants, GP and other medical professionals who are in charge of my care. This isn't a routine that would work with everyone and should read objectively and in terms of my personal circumstances.

That first peak flow will govern what I will do that day, what meds I need and whether or not we should be on our guard. The scale usually works as so:

Best ever (and what I aim to get) peak flow was 400l/min.
-300l/min and above: usually very good and not much by way of symptoms, carry on with inhalers as needed and take maintenance dose of prednisolone 20mg.
250l/min-300l/min: Start being on guard, symptoms will start to manifest themselves. The best thing is to take nebs as needed and try and keep on top of symptoms. 
200l/min-250l/min: Symptoms will be getting worse and I may struggle with day to day activity. 4 hourly nebulisers, plus extra Ventolin PRN (as needed) and increase steroids, if no better in a week, seek advice. I seem to be in this range more often than not these days.
Below 200l/min: Neb immediately. Usually by this point, I will  be really fighting to breathe and won't be very chatty and will be completely apathetic. If things are no better then seek urgent medical care. See a doctor ASAP.

The peak flow helps us to gauge just how my asthma will behave. After I have done nebs (or inhalers) I then check it again to mark any improvement. Before the nebs, I usually like to take my tablets (and Oramorph when I need it). My usual morning routine is:

-20-30mg Prednisolone (oral steroids).
-200mg Sertraline (an SSRI antidepressant).
-225mg Phyllocontin (Aminophylline for my asthma).
-1g/60mg Co-codamol (1g Paracetamol to 60mg codeine, pain medications). I repeat this every 4 hours.
-100mg Tramadol (another strong painkiller). This is repeated every 4 hours.
-10mg Loratadine (antihistamine).
-750mg Carbocisticine (a drug to help me with my respiratory secretions, makes them less sticky and easier to move).
-30mg Lansoprazole (for my reflux problems).
-10mg Buscopan (for my IBS).
-5mg Ventolin (salbutamol) /500mcg Respontin (ipratropium) nebulisers OR 2 puffs of Ventolin and 2 puffs if Atrovent inhalers, (depends on peak flow).
-2 puffs of Symbicort (preventer/protector inhaler).
-5mg/2.5ml Oral morphine. (For the days when the pain is THAT bad, I can have this dose every 3 hours or I can have 3 big doses of 10mg/5ml, but we were told that it was probably preferable to me to do it every 3 hours instead of every 6, keeping a constant stream of the drug in my system which ultimately means that the pain relief is constant.

This is my morning "cocktail" and is sometimes added to with antibiotics if they're needed and Alendronic Acid (for my bones) on a Wednesday. Things like the Co-codamol, Tramadol and nebs are repeated every 4 hours (although I can have Ventolin nebs between times if I need them) whereas the Carbocisticine is repeated in 6 hours, the morphine every 3 hours and antibiotics as prescribed (usually I take the middle dose with the Carbocisticine) as well as my "As Required" drugs like Lorazepam (I have up to 3 of those a day) for the stiffness in my muscles around my airways and stiff, sticky lungs. I do wonder sometimes about how much harm this lot can do to the body and worry that I could be doing myself harm but the alternative is not even worth thinking about. 

Once the tablets are all done and between topping them up I try and do as much as I can and is possible, whether it's a wander up to the shops or a roll up to town. I try and make the best of my days and enjoy myself in doing so. Besides, what is the point in allowing yourself to be sat around feeling miserable all day? Between us, my carer and I have set up routines and I do try and keep to them as best as we can. The best part of having a friend as a carer is that we can understand each other but still maintain some level of distance in that we aren't overly emotionally involved with each other and the other's lives. Don't get me wrong, Natt and I are very fond of each other and we are like brother and sister, but we do have our boundaries. I get him to help me with some of my drugs, such as the morphine, because some of them could be catastrophic if given wrongly and it is better to have 2 pairs of eyes on the syringe as I draw it out and before I take it to verify amounts.

My night routine usually starts about 11pm. It's in this time that I start getting ready for bed and sort out my tablets and nebs to allow for a peaceful sleep. Sleep is important for me to recover from attacks and whatever the day has thrown at me. Before bed, I have to take another peak flow and record it. I take them periodically through the day as well and note any significant changes. It's important to keep a good record of my peak flow because it allows my team to know what has been going on by clinical data rather than subjective data such as how I feel.I tend to mark in one colour what I started at, and in another what I got after my treatment. This is good because we can see how well my treatment works. If it wasn't working for me, then we would have to reconsider what I was on and make the appropriate changes. Also having this can help us tell when a serious attack could be looming over my shoulders. Usually you can really tell when it's about to happen by peak flow readings and how I have generally been. Usually when my peak flow has really dropped, I tend to be really symptomatic and generally not that happy with myself. I tend to hide away and not want to be around people when I don't feel well. My night meds are done after the peak flow and I put them in my little plastic cup ready for me to take:

-20mg Amitriptyline (for the arthritis and to help with pain caused by the nerves).
-225mg Phyllocontin
-750mg Carbocisticine
-200mg Quetiapine (an antipsychotic).
-50mg Hydroxizine (general allergies).
-10mg Loratadine.
-1g/60mg Co-Codamol.
-100mg Tramadol.
-20mg Bambuterol (turns to another drug in the system, for asthma).
-10mg Montelukast (another asthma medicine).
-20mg Buscopan (for my IBS).
-1mg Lorazepam (helps me sleep and relaxes my muscles).
-5mg/500mcg Ventolin/Respontin nebulisers.
-10mg/5ml Oral morphine.

Usually after this horrible lot, I am ready to just curl up and go to sleep, ready for the next day to start and the routine to begin anew. It probably won't surprise you to know that I do sleep like a log and save waking every so often for medication or to bring up the thick gunk out of my chest, I do feel rested the next day.Its not a fun regime and it is time consuming, having to measure out meds or give them at exactly the right times. But to someone like me, this is what life is like. So I hope this has given you some insight as to what treatments I get for my asthma and other conditions (because there are plenty of them to keep me busy) and some insight in to something important that keeps me alive and ready to fight another day.

Wendy xx

Health Costs...

In the UK we are lucky to have our NHS and for those of us on benefits, have certain conditions or on low income are allowed free prescriptions to help them afford their healthcare. Admittedly most people only have a prescription now and again but for some people whose illness isn't covered with free prescriptions and they aren't entitled to it any other way, affording to buy the medicines you need can be expensive. The cost of a prescription in the UK is going up to £8.05 per item.

Last night I got wondering as to just how much my prescription costs would be for a year. To work this out, I had to take a look at what I was taking, how much of it and how many prescriptions I needed in a year for each item. Some items I have to only get 6 times in a year, some are twice that at 12 prescriptions a year, and that is before you consider any acute prescriptions I have (things like antibiotics and other medications or creams for my skin troubles). I worked out that I took about 50 tablets a day, plus nebs, inhalers and morphine. Its a full routine to take care of and it is in some ways a full time job for myself and my carer as the medications need to be given at certain times of the day and at certain intervals, but I digress.

I have a 6 page repeat prescription which has 24 items. Some items I do have to collect more often than others. I worked out that in total, my prescription costs (before acute) totals out to £1690.50 a year. Then when you add the extra "acute" meds as well, my costs come up by £668.15 and bring my total costs per year to £2358.65. I worked this out by working out how many items I had per year and how often. I have on average 210 items a year of repeats and 83 items a year acute. And that is just on this year's prices, but even so, that is not an amount to be sniffed at. If I wasn't on ESA (Employment and Support Allowance) then I would struggle to afford my medication and would have to make stark choices between whether I had my tablets to keep my conditions under control or not have them and die. I wonder how people who aren't entitled to free prescriptions feel when they have to pay for their health costs. Would they have to be "careful" with their medicines? Or go without to save money?

There are some conditions where you are entitled to free prescriptions. People with heart problems, thyroid problems and diabetes are entitled to free prescriptions as their conditions would be fatal if they went without. I believe that people with lung disorders like COPD and asthma should be covered in the same way. In the same way that if someone with a heart condition doesn't get their medicine, they can die, a person with asthma would die without having steady supply of their inhalers and other medications. Admittedly for me, it doesn't make much difference as I get my medications for free, but I am just one person. Asthma UK is trying to campaign for free prescriptions in the UK for asthma patients but the MP's seem reluctant to look at it.

The new government is all about saving money. Kicking people off sick benefits when they are no where near fit for work (I read a case recently about a woman who was in a coma who received note that she attend a work related activity!) or trying to cut costs any other way they can. It's horrible to think that they can treat humans in that way and make us work like dogs until we are beyond help. I have been lucky as I say and have avoided any problems in that respect but I want to raise awareness to those who are struggling and have to make ends meet regardless. I admire people who can make ends meet that way but I would love to see a day where no one has to suffer because they couldn't afford decent healthcare in this day and age. Especially when we have the NHS and other things in this country to prevent such a thing. In America, if you don't have the right insurance, you can be left to die at the side of the road, is this really what the UK will end up with again? I hope not.

Wendy xx

Saturday, 22 March 2014

Post Admission Stuff...

On Thursday I had that oh so daunting follow up GP appointment after my admission. This is usually a week afterward to see if things are moving in the right direction and that my chest is clearing. Well it's a lot clearer at the bottom with just remains in the middle/top part of my lungs. So we are getting there, slowly. I have a weeks co-amoxiclav to take and a week to keep in reserve (just in case things start raising hell again and knowing that it takes a month to get seen at my surgery, easier to nip these bastards in the bud rather than allowing a full blown LRTI to develop again). I am glad of this because I can get rid of this thing that has been making me feel miserable and hopefully my pleura will recover soon as well.

On Wednesday, I had what was one of the most painful experiences I have had in a long time. I had one of those types of attack that announce it's arrival by excruciating pain that starts in the bottom of my chest then works its way up. The pain was so intense that I couldn't move, breathe or even do anything without it. I don't get these kinds of attack often, but they are probably among the most brutal. I did try and go out and do something simple like a walk (or roll in my chair) up to the shops and back and because I couldn't focus, some toes did get squished sadly. When I came back, I took a dose of my tramadol and lorazepam to try and alleviate the spasming, but wound up needing nebs and a full 5ml dose of Oramorph (oral morphine, tastes like crap but I swear it works). Within a couple of hours and the right meds given, it eased off and I was left feeling, frankly, exhausted and just wanted to sleep. So I did.

It made me remember one attack that started that way back when I was living at my mum's in Stafford. I was about 20 at the time and had been stressing around most of the day trying to find a place of my own (being at "that age" I wanted my freedom and independence) before having work in the evening. I had noticed the pain start and had been using my inhaler (this is back when I could just use an inhaler and be done with it) and had done everything I could at the time before setting off on the 2 mile bike ride to my workplace. Back then, 2 miles was nothing and it didn't really ever bother me, unlike now where if I tried it, the only place I would end up is in the back of an ambulance. I got about 3/4 of the way there and bumped in to my mum, explained to her (as well as you can when you're breathless) what was happening and was given the advice to go to A+E after informing the supervisors that I was not well enough for my shift. My supervisor saw right away when I got up there that I was really fighting for breath and she took me aside in the office before getting a wheelchair and taking me to A+E herself. Back then, I was working at Stafford Hospital as a housekeeper.

It was the first time I had ever felt scared of what my asthma could do. I had had admissions to A+E before and had nebulisers given but I always came back from it unscathed. It wasn't until I was a bit older that I realised just what asthma really meant and how it was going to almost destroy my life and nearly end it more times than I would like to admit. If I had known what I was experiencing then was the tip of the iceberg then I would have spent more time enjoying the life I had, not lamenting what I thought I lost. I guess that hindsight is a wonderful thing and the more I dwell on it, the harder the cards I was dealt seem to feel. I was given a harsh hand in life but I don't see it as a thing to sit around feeling sorry for myself about, but more something that physically and emotionally I can overcome.

I always get a bit nervy about doctors because I find the whole thing very stressful. Theres something about going to see a doctor and having to ask about something which is on the heavy side of things. Since being in hospital, I have been on oral morphine for the pain and it is something that a lot of doctors (quite rightly) get a bit angsty over because it is a strong drug. It is a "controlled drug" (meaning that rules around it tend to be a lot stricter and it is something that has to be dealt with carefully, and unlike my other meds, I can't just carry with me for obvious reasons!) and it is ultimately very addictive and in large amounts, extremely dangerous. I was anxious about talking to the doctor about that as it has been mentioned before and denied, so I saw a different doctor who listened to everything, looked at all of my test results from the last few weeks and he OK'd me to stay on the oral morphine for one important reason. It works. It works well. The problem I always find when it comes to talking to a doctor about these kinds of things is that I always feel like I'm being judged as yet another drug seeking person after a high. Maybe that is a perception thing though. I have no idea personally, just that it is something I needed to push through. And I have and I felt better for being brave enough to stand up.

The thing with oral morphine is getting the dose right, the smallest amount possible to control pain symptoms. I have an allowance of 5ml (which is 10mg) within 6 hours. What I have found works best for me is 2.5ml every 3 hours which is what I was given in hospital. This works and keeps me very comfortable and I get good control with the other pain killers I take. It has been just wonderful to be out of pain for the first time in a long while. I had forgotten what it felt like. Not feeling sharp pains on breathing in or feeling physically sick because of the pain. That has, in turn, helped my breathing to no end and has meant that a comfortable breath in is less of a rare thing. OK so I am still not out of the woods but I will get myself there. It's not too late to hope that better health could be an option and I want to fight towards that. I won't be running marathons or doing long shopping trips on foot anymore, but it would be wonderful to be able to walk from the house to the shop, with a stick and not have to use my wheelchair.

I do love my chair, but getting to that point where I had to get one was kind of a sad thing. The problem is knowing when the time for it is and when you really can't cope without it. My scooter was alright until recently when my needs changed. I didn't just need something to get from A-B but something I could use in the flat if needs be and something that another could push on the days when I was barely with it enough to operate my scooter and needed to be somewhere (like a doctor's appointment). I have found a new home for my scooter with an old friend who when she can collect it will have her life changed for the better, just like mine was when I got it. I will continue whizzing around Redditch in my chair and carry on living life as best as I can. It took me some time to adjust to having a joystick rather than a tiller steering system and I admit I have probably run over a number of feet and crashed a couple of times. I am getting more control and confidence the more I do it.

It does have to be said though, Redditch isn't the most friendly place for disabled people. The bus drivers who should be friendly and obliging towards a wheelchair user can be extremely rude and try and get out of helping as much as they can. Rolling along some of Frankenstien's paths (paths ripped up and replaced, lumpy and bumpy) I sometimes feel my wheels leave the ground so I have to use my weight as a kind of ballast. There are areas where a dropped curb seems to be a luxury and frankly it can be a pain in the backside (literally in some cases). I remember one trip to town and back, I hit bumps in the road on my scooter, one jolted me so hard that it partially dislocated my shoulder (very painful and had to be pulled back in to place). I wonder if they will ever sort the paths out and make them less of an obstacle course? I guess it takes a lot of voices to make changes.

Wendy xx

Thursday, 13 March 2014

New Meds?

It's only when I have spent time somewhere else that I realise how much I love my home. From those silly things like the noises the animals make, the fact that my bedroom always has this sweet lavender/vanilla smell, the models and how just sitting around with friends enjoying a cuppa and good long chat about nothing. There really is no substitute to your own bed. Your own surroundings. Your own little "cave" or "nest". When you feel low or unhappy, theres some magic about being able to just curl up in your own bed, cry it out and not have to worry that your emotions could effect the wellbeing of the others in the room.

When I get upset or annoyed about things, I have had this horrible habit of pushing myself back a bit and holding back how I feel. It's unhealthy, I know but it has always been my way of coping. Eventually, when I haven't been sleeping well or have been in an alien environment for a while, its like the pressure gets even higher and I just want to stand in the middle of a room and scream. Scream until my lungs are empty and painful. Scream until someone comes and tells me that it's alright to feel that way. I just want to huddle up in a corner and cry until all the pain goes away and things become "normal" again. When I got upset while in hospital, I spent the day hidden behind the curtain, in my own solitary shell. Somewhere I could just let it all out and not have to worry that someone would see and get upset.

After getting upset, I felt tired so slept for most of the day. I didn't want to eat because I felt so unwell and was in so much pain. But after allowing my tears to come, almost cleansing, I felt better and I felt as though an enormous pressure had been lifted from my shoulders. I started to recover better once I had finally let myself express my deep seated fears and frustrations at having to face illness at such a young age. I let myself feel angry that it had come to this. I let myself feel frustrated that yet again I had almost died and I let myself feel repent for how I had treated one of the best friends I had ever had prior to this because I had become so ill and felt cornered. The one thing that bothered me most when I started being more alert to my surroundings (which took about 3-4 days) was that this had come close and I had never even had chance to tell the people I loved the most just how much they meant to me. Sometimes you have to let it all out to help it all go away.

I'm glad to be home though. As lovely as the nursing staff of Ward 2 are, I am happy to be back home. In my own environment and in a place that feels more natural for me. To me, a natural environment is my home and despite the occasional issues with noisy neighbours and kids, it is where I am able to let my hair down, make a cuppa in my favourite mug and just chill with a DVD or something. I always find other people's "noises" a distraction in a hospital, purely because I am not used to the sounds. But then again, someone else would find the sounds around here distracting, sounds like arguing bunnies or kids running around outside. You just have to relax sometimes and let things wash over you, and remembering that noise cancelling headphones are the best way for a good nights sleep in a strange place.

I do always struggle with being in strange places. After the first few days or when I start to come round a bit, I become more and more aware of what happened and where I am. I find it quite distressing because I am one of those kind of people who when they need to be by themselves, they NEED to be left alone for a while. Being stuck around people and in a lot of pain can make me miserable especially when you just want someone to make that go away, even if its by just hugging you until you fall asleep or taking some time to sit with you and make you feel better. The nursing staff did help there and I was soon sorted out and the best teams to manage my care were informed.

I'm happier now I am back with a respiratory consultant. I had Dr V before and he is absolutely lovely and has reassured me that I won't be losing my home nebs because they have helped me so much and have made such a huge difference. As I said before, I don't think I could go back to stages where it wasn't a case of how often was I in hospital but how often was I home? Emotionally I think it would break me. Physically, I think I would be ready for the grave and I don't want to entertain that feeling again. I am remaining positive because the Carbosistine has started to help me shift the gunk, like Dr M said it would despite Dr P deciding that it wasn't the right medicine for me (I wonder how I would have been had I gone on to it when Dr M suggested?) and didn't want to try it. Well, we'll see what happens in the future and I hope my body will start to improve, I'd love to be well enough to be able to take short walks. But we'll see.

Wendy xx

Tuesday, 11 March 2014


It's been a week since I was admitted to the hospital for my asthma and this savage chest infection. I wanted to be making more progress and from talking to Helen, one of the nurses, and Emma, a student nurse, the feeling isn't just my own. For someone my age, it has to be easier to shake off a nasty chest infection than I have been finding it.

Its kind of frustrating.

This is the longest my asthma has left me an inpatient and theres going to be a lot of assessments and safeguards that need to be completed and set in place so that I may live a more normal life and with a better quality of life than I have been. I will be assessed by pain specialists and respiratory specialist teams. Those teams will look at how my asthma can be managed better at home and make it possible for me to spend more time at home, rather than in the rather daunting hospital environment. I had a good sit down and chat with some nurses and I let my tears of frustration finally come. I have this really bad habit of pushing how I feel down further and further down until I can't manage anymore. Kind of how my asthma has been "managed".

Before coming in this time, I was just about using my nebs to get through the days faced with more breathlessness and barely managing to do the simplest things for myself. You know, things we take for granted like being able to brush my own hair or prepare myself a simple meal such as simple instant noodles. Being left to my own devices the days leading up to last Monday, I wasn't really getting anywhere. My peak flow was struggling to get over 200l/min, my body was exhausted, I didn't eat, I just slept or lay in a haze of pain and not being able to catch my breath even doing the smallest things like going to the loo or getting a drink. It's hard to think that they would think to send me home in this state as I would almost certainly be back very quickly.

I had a review from both the respiratory and awaiting to see the pain team. These specialists should be able to help me with my asthma management on a more long term aspect. Every asthmatic gets an exacerbation at some point. It's a cruel part of the condition, but its one that no matter how hard you try or how well your condition can be, its just one of those things. The problem with me lies in that this event which is normally a "one off" thing for most asthmatics is more of a regular thing. I know the staff in A+E well and some of the ward staff too. Its good to know the staff and feel like theres a familiar face waiting to help, but the whole thing is tiresome for me, costly for the NHS and means that I don't really have that much of a quality of life.

The one thing that worries me is losing my nebuliser at home, for no other reason than it being the sole reason I am not constantly in hospital. Before getting my nebuliser at home, my quality of life was so poor that I considered ending it several times. I was being taken to A+E 2-3 times a week at the worst just for nebulisers, I was never particularly great in between and I was frankly in a very bad place physically and emotionally. Since getting that machine at home, I have been able to handle my attacks myself and then be able to shake it off and rest and feel better. Without having to come in to hospital, get poked and prodded around with and then discharged late at night knowing that given a few days I was right back where I started. I remember once, I said to the doctor "I want to die. Just let me die." and that was my lowest ebb.

Admittedly, how does one measure "quality of life"? Its not a tangible, physical thing is it? Maybe it's more of a mental thing. Down to what one wants out of life. What I would want for my life would be: independence, not to be wheelchair bound, to live a normal life outside the hospital (it would be nice to spend more time at home), I'd love to be able to walk from home to the corner shop without being short of breath or needing my crutch to support my back. I'd love to go back to when I used to go out and listen to local bands and even see some of my favourite bands in concert (albeit I would have to be in the seated area now due to my health) and I would like to be able to travel stress free. I don't think I ever could go back to twice weekly exacerbations that land me in hospital for the use of a nebuliser, especially when I have enjoyed 4 years of it being available at home and has made my life so much more comfortable. I want to go back to only needing to use it every few days rather than regularly every day. 

I don't want to be in pain. I don't want to have to take strong pain killers to just be comfortable enough to get some rest. So the next step is getting a scan and having my lungs thoroughly examined so that we can find out why. Why these infections keep happening. Why I have very poor control from day to day and how we can put it right, if of course this is something that CAN be put right. And if so, how can we do it, what would it involve and would it improve my physical health to the point where I could return to my studies, get that HND I wanted so badly and still taste the bitter taste of what could have been. But before I can do that, I need to know, what is killing my lungs so much and so rapidly?

I am really hoping these assessments are going to help me.

Wendy xx


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