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. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.
I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. 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.
A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.
I'll flap my broken wings and erase it all someday... You'll see.
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).
-200mg Quetiapine (an antipsychotic).
-50mg Hydroxizine (general allergies).
-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.
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.
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.
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.
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.
This is the first time I have ever blogged from the hospital, a few days in from having a bad one. I am doing better and am down to 2l of oxygen finally. Maybe by tomorrow we can say that I am off it altogether! Every step forward is a step closer to beating this thing and getting home.
I have always been a firm believer of giving credit where credit is due. If someone does something exceptional for you then it is only good manners to say thank you. In this case, the person I want to thank is the brilliant paramedic I had on Monday. Not just because of the medical side of things, but how he managed to make a personal rapport with me and made me feel less like a number and more like someone he truly cared for. I have had a mixed bag of paramedics, some have been wonderful and so kind, others have been rude or complacent and made me feel anything but at ease.
This event however was the most different attack I have ever had. I was going through the usual motions that I tend to go through before I have a big one. Usually it starts with behavioral changes, only subtle things that those closest to me can notice, like barely being interested in anything, wanting to do little more than sleep and being off my food. Usually it kind of comes, hits, gets treated and away we go with it and then I have a few days feeling delicate before springing right back again. The decline on this one took much longer than expected and it wasn't helped that my own emotions were playing more of a part then really they should have.
One of my main reasons for holding off so long was that I was painfully aware of the last few times I was admitted, how traumating that was because the staff ignored what I was saying and then ignored my GP's instructions regarding my "regular medication" regime, waiting around in pain for hours on end and no one looking to help relieve this until Natt made enough of a scene that we couldn't be ignored. Last time, I was so exasperated and frustrated that I just wanted to walk out! I tried that again last night, this time because I just couldn't handle it anymore, but a very kind nurse found me halfway down the corridor, helped me back to bed, helped me calm my chest and sat with me and helped me through it. When I did finally manage to go to sleep, I think I put my music on and slept right through the night until morning.
But I digress, I was feeling rough and kind of grumpy most of Monday afternoon. No other reason than I was tired, I was in pain and my chest felt as though someone had dropped a boulder on it. I was nebbing at home but not getting very far after each one. I did instigate a little bit of an argument with Natt because I was in a foul mood and just needed something to outlet it on, don't get me wrong when he arrived at the hospital with his smile and kind, soft voice I broke down and apologised to him and he wiped away my tears and he told me that he knew I didn't mean it and that I have just been so frustrated recently. He stayed with me through resus and once I was settled and ITU stood down (they had been preparing to tube me if I hadn't gotten much better) he cane with me to the ward, staying until I finally fell asleep at 2AM.
However between home and the hospital, I am really struggling to piece together what happened. I remember sitting on my bed and doing a peak flow which was about 170l/min, thinking to myself to try again and if it was still under 200, call it as nothing I was doing was helping and by this point, I was barely able to say a word in one breath. I had to get my neighbour to direct the paramedic to the flat where I had just about managed to perch on the end of the bed, I knew at that point, I wasn't going to be going home from this one. The paramedic assessed the situation quickly and started nebulisers and oxygen right away. As soon as we realised that wasn't going to work, the paramedic started bringing out one of the big ones. IM Adrenaline. As well as cannulation and IV Hydrocort (I ended up having 3x100mg Hydrocort that night!) and as he couldn't get a truck for back-up, we had to speed in the car. One thing I did think was going down the Alvechurch Highway at 120mph with blue lights and sirens blaring was actually kind of fun (probably because of the adrenaline!) When I finally came around to what was going on around me, I was confused and the first thing I turned around to the nurse and said was "Where are my clothes?!"
I've been on Ward 2 now for a few days. Its been a rocky recovery so far and I have had some episodes where my chest just hasn't wanted to play properly. The underlying problem I have is an LRTI which has basically been on and off for over a year, it caused some abcesses which seem to have started to calm down and the rest of my respiratory tract is still on its way to getting better. It may need more antibiotics and even when I get out of hospital (maybe tomorrow?) I am probably going to be recovering for a little while yet. Recovery from asthma isn't easy at the best of times, its actually harder when you have a lot of other issues to deal with all at once. I know now that I really did try and leave things FAR too late and it has actually hit home with me again, just like last year when I almost died from my asthma.
It's those times it gets too close for comfort that make us realise how lucky we are. Nothing is trivial and should ever be taken for granted because you never know when something will come and knock you sideways. This isn't something that has happened often but there have been more instances, particularly in the last year, where things are not just coming to a head, they tend to mushroom cloud and the parameters to catch it at JUST the right time are getting harder to see. One change from one moment to the next can be either catastrophic or the reason I came through it in the end.I really do need to stop trying to push myself as hard as I used to. I'm not 19 years old any more and unfortunately due to reasons I can't really change, I now have very poor lung function for someone my age. I need to acknowledge that and take that in to account sometimes because it is the main reason I am struggling so much. I want to live as normal a life as possible but I can't so Ii do what I have to. I make do.
I'm not sure exactly how much longer they want to keep me here and we are trying some new meds and possibly other things to try and sort of "bridge the gap" to help me get my life back on some kind of track again. Well. For now. We'll see what happens.