For life's little ups and downs.
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.
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.
Thursday, 26 February 2015
Sunday, 22 February 2015
One thing that people ask me about is the readings and numbers I have to check and keep an eye on and what those readings mean. Taking readings and clinical measurements is important when it comes to monitoring and managing a condition. Certain ones can show how serious things are.
The most important reading that any asthmatic should know and measure is peak expiratory flow. This is a measure as to how well your lungs are working at any given time and can point out whether things are suddenly getting worse. It is a reliable tool to show how well the medications are working rather than word of mouth. Its measured in litres/minute and a reading is taken by blowing as hard as possible in to a plastic tube or meter. I use an electronic meter device called a Piko-1. I find it more convenient and reliable than the plastic tubes you get from the doctors.
For someone my age, sex and height, a normal value would be 450 l/min. My personal best is 400l/min when I am well. My 75% mark (which indicates that I am starting to become unwell) is around 300l/min. Usually from here, I have to start being cautious and keep a close eye on things. If it goes below 250l/min, this is where we really start worrying and look at seeing a doctor asap. My 50% mark, anything below there is considered "critical" is 200l/min. Usually if things fall below there, I'm going to start showing signs of slowing down. My oxygen levels become unstable after the 150l/min mark and the usual protocol is to nebulise first and if things get worse or I drop suddenly, call 999 and get an ambulance. This is the point where things start getting life threatening so calling an ambulance is more than appropriate.
Calling an ambulance isn't something I take lightly. I'm not the sort or person who calls them for little reason and when they are called, they are always the first to say that I did the right thing, if not a bit later than I ought. I know a lot of people would say "its only asthma, why are you calling an ambulance out? They're for life threatening emergencies" and to them I say "my asthma is a life threatening emergency. Had I not made the call then I could have died." There's been times when the person who was with me has had to be warned that either an intubation maybe on the way or that there was a chance that I could die. Its a scary thing and knowing how close it's come does tend to make me worry but I try to do what I can.
Over the last few days my peak flows have again dropped to below the 50% mark and although I'm keeping on top of it, I can't deny that I haven't been at all well. I've been sleeping a lot, barely interested in food (its been a recent worry that I've not been asking for meals due to no appetite and my breathing has been worse) as well as a cough that's become quite weak. It'll be alright though, I know my limits and when things are getting too much I know what to do. Although I am really hoping it doesn't come to that.
Tuesday, 17 February 2015
I've been working hard recently on my drawings. I find drawing so much of a positive use of my time and money (I admit I do shop for the high end, decent materials because well you get what you pay for in quality, plus cheap stuff never looks good anyway). It gives me something to work on and when its done, it is heartening to have someone look at your book and enjoyn what they see. It makes me feel good and no one can ever take that away from me.
Right now, my project has been drawing the cute Pokémon characters I've come across in the game. I'm playing Y/X at the moment (I've completed the story of X admittedly) and I have hundreds of these cute creatures. When my carers come, I do like it when they ask if I've drawn anything new. I'll never be a manga drawing master but I'd like to think my work is at least making people happy. The only thing that bugs me is that the alcohol based markers I use (I use Letraset Promarkers) are a bit heavy on my chest. Its a shame really because the colour laydown is so smooth and they blend well. (Colourless blender pens, probably one of the most important as I use them to blend lines, shade and generally do with my hands what I used to rely on digital touch ups to do.) I do recommend them even if they are a bit pricey. As I say, when it comes to art equipment, you get what you pay for and these pens are brilliant.
I'm lucky to have something to just do for fun. I couldn't imagine what it would be like to not have my own place to belong and make my mark on. As I've often said, I may not be able to do much but I do like to do things properly. My lungs may be failing but its not going to mean the end. One day I'll get some new lungs and when that happens, I'll carry on making my life as good as it can be. I don't mope about the past, to be honest, I don't ever give the people who hurt me the satisfaction in even being in the background of my life. They don't exist in my life. They don't deserve to have any part of the weird and wonderful life I have and they don't deserve to make me feel miserable. After all, no one can make you feel inferior without your consent. Besides who would choose abject misery over the chance to enjoy life. I choose to live my life and do the things that matter to me. Life is short so we should make the most of it.
Natt will be moving on soon, I won't divulge the details as its not my place to disclose someone's personal details without consent. People are entitled to privacy. I won't lie, it'll be nice to have my living room back and when we finish doing it up, it'll be lovely. That doesn't mean that I won't miss having him around. The thing with a close friendship like that is that no matter what, there's always someone to have your back and you have theirs. It was good to help out a friend during their time of need. I didn't do it for anything else, just that he needed a place and I had room. To be honest, last year was a trying one for us both, we both had major health blows and we supported each other. And even when he's not living here, we won't be strangers. After everything, I don't think we ever could be. We are all like siblings here and we look out for each other. We have been friends for nearly a decade after all.
I don't think I could be without all my friends and family, including the furry critters. Its hard to imagine but my little Tenzou is 3 years old now. I remember when I first got him and his brother, how tiny they start out. I remember a time when I could hold Bumble in my hand and his ears were huge compared to the rest of him. Its weird to see my little fluffy boy become the cute, crazy little thing he's become. They're all special and they all have their own funny little characters. This is why I love them. The bunnies too. Ginger and Loki have grown up well from those tiny little kittens, and they really were tiny. Don't think my house would be a home without them.
I'm just hoping to get better over the next few days. My lungs have been full of muck again and I've still got the strange spots all over my neck, chest and back. We don't know what it is but it seems that whatever it is, its possibly reached a systemic level which could be dangerous so it may result in a trip to the horrible place but I don't want to say too much. If it happens it happens.
Sunday, 15 February 2015
I had been planning a valentines day with Jace. It was disappointing that this couldn't go ahead because of my chest and my body coming out in a nasty rash (itchy, burning AMD blistered) but it didn't mean that there was any love lost. If anything, Jace showed me love with sweet messages and generally being there for me. The distance thing is tough though and my physical limitations can sometimes make things tougher. But in a way, the fact we're still together and as in love as we ever were makes me appreciate him more. We have had times where its been rough, last Christmas was probably the worst because I was stuck in hospital. Unfortunately that is a recurring thing and nothing apart from new lungs one day will fix it.
I'm lucky to have people around to offer love, compassion and support when its needed. Even if it's just popping in to the bedroom to ensure my comfort or going up to the local shops. When I think about where I was emotionally just 4 years ago and compare it to now, I realised just how far I've come. From browbeaten and miserable to bold, confident, independent and happy. It has been a heck of a journey, one where I had to accept that this is what my life is, but a journey I am glad to have taken. That's why I now venture out of the house, yes in my wheelchair and yes I have my oxygen on, and hold my head up high and feel proud.
I love my wheelchair, the one thing it has done for me has its given me my freedom back. Walking around town lost its fun when my lung function started to fail. Limping about as much as possible and then having to go the long way back on the bus just so I could run a nebuliser through. I remember the first time I used a scooter in Tesco. Becky and I were doing our shopping and thought it better as I'd just left hospital and could barely stand up. Since then I've gotten more confidence. I've been using a scooter/wheelchair for nearly 2 years. Its made a difference and I'd like to think that even with morphine on board, my control is excellent, also been told that by others so I have to be doing something right. I've not run in to any one, deliberately (not that I ever would? I mean who would deliberately knock some one over with a wheelchair, there's got to be something very wrong with someone to do that kind of thing) or otherwise. When I'm in control of that chair, its my responsibility to make sure that I, any company I have, and the surrounding people are safe.
Today seems that I'm feverish and drowsy. Kind of part being poorly but still it isn't really nice to feel like you've been burning up. I think the worst thing is how draining it is. It'll get better, just need to fight the infection off then the inflammation and fluid will go away. Just got to take it one day at a time.
Wednesday, 11 February 2015
Recently I have been using an old method of keeping my mind off the things going on around me. Some people turn to drink or drugs when things get them down. I used to cut myself when things got too much to handle (it's been 2 years since I managed to stop that, which I am proud of, admittedly I have had moments where I was close to relapse but I kind of gave myself a internal ass-kicking for that) or starving myself because I wanted to be "perfect". I do sometimes go back to the eating disorder side of things and I will admit that I haven't really wanted to eat much, but the way I see it, I don't really do much at the moment but I am trying to make sure I do eat at least once a day. Its not helped me that I've had pneumonia again and while being vulnerable I've picked up a possible case of shingles. Would I be better in the Alex? Possibly but its a double edged sword, I'd be on a ward where I'd be susceptible to all kinds of infections (particularly on a medical ward).
One of the biggest ways I have coped with my life and the barrage of illnesses that I have had to deal with is through my art. Even if its just drawing a character from a book or a game, there is something cathartic about the expression of pencil on paper. I recently brought myself some posh, high quality drawing stuff. I have loads of drawing stuff anyway but sometimes splashing out on something nice can really inspire me to do more. It was because of Becky that I really started to blossom artistically because she basically stopped me tracing things through the laptop screen (I took down all the traced work and was surprised with the stuff left over). She taught me to believe and have confidence in myself (cheesy, I know) and what I can do. To me, that is the most important thing, having someone have faith in you, someone who sees you even on the days when you want to be invisible. Since breaking my hand rather impressively, I got these pains in the knuckle and had to retrain my hand again to draw. In some ways it's changed how I draw and made me better at it.
I could so easily have given up with everything when it got intense but to be honest, I am glad I didn't. Sticking it out proved to me that no matter how hard things get, the people you care about most that are the ones who keep you going. I think that without the people in my life who were always there with love and support, I wouldn't have gotten to this point and lived to tell the tale. They were the ones who would pick me up when I fell over. They were the ones who would give me a hug, tell me it's alright to get scared or upset and they were the ones who then helped me move forward. I do consider myself very VERY lucky that I have people like this in my life and I am not ever really dealing with everything on my own. Not really. Even if I try locking myself away, people can still find me, help me and, to my bemusement, love me. Even on the days when I couldn't even like myself.
So it looks like Valentines for me will be spent in bed and not passing on whatever I have because I don't want it! I don't want to share it! Maybe with a couple of box sets, maybe snuggled up and keeping myself comfy. I'd prefer to spend it with Jace but as chances are, this is contagious, it's not worth us both being sick.
Monday, 19 January 2015
1. "...but you don't look sick..."
This is probably one of the worst ones I have been subjected to. It's a way of implying that just because you don't look stereotypically ill, (and what is stereotypically ill anyway?) then you can't be having any real problems or be in any real pain. This always gets my back up and provokes a response of "well, you don't look like an ignorant prat, but here we are." I will speak my mind about things and well when people say things like that, I have to speak up and tell them that I think that they're ignorant.
2. "[insert name here] has [insert condition] and they get along perfectly well. Why aren't you?"
This is another really ignorant way of implying that you shouldn't be the way you are and can't possibly be suffering because someone with a milder form of the condition doesn't suffer the same way. I know some asthmatics who can still do things like cycling, that's great for them. But for me, my condition makes even the simple stuff almost impossible. So, kudos to those whose condition means that they aren't limited in the same way, fantastic, but sadly I am not one of those. Sadly my condition means that I can't get out of bed, make myself a cup of tea and carry it to the living room. I can't walk the short distance to the shop and back. Heck, I can't even wash and dress myself without wearing myself out. I do try and do what I can, and everyone who knows me can vouch for that, but the effect it has on my body afterwards is often huge.
3. "Oh well, it could be worse..."
This is just a way of making a disabled person feel guilty for how they feel. Yes, there are people out there who do have it a lot worse and I have a lot of empathy for them. Just because my condition isn't as bad as theirs, doesn't take away from what my condition really is. You can try and belittle it and justify yourself in doing so if you want but there are just some things that are ignorant.
4. "Just think positive! That'll make you feel better!"
If that ideology was true, then certainly sitting and thinking "I am the king of France" over and over again will suddenly see me getting crowned as the king of France. Right? No? So, no matter how many times I sit here and think "I'll get better by thinking I'm fine." then it just isn't going to fix my body or unscar my lungs. It isn't going to make my breathing any easier and it certainly isn't going to help me feel better, if anything, it makes me feel worse because I crash when I realise my reality is as it is. I try and look on the bright side but I do so with care and consideration as to my situation. It is like an "educated positivity" if you like. I look at the reality of the situation, take in to account what I can and can't do.
5. "Have you ever tried [insert treatment here]? It worked for [insert name]."
You can be sure of one thing, I have tried as many different things as anyone could think of. I have tried yoga, acupuncture, physiotherapy and a list of different drugs that is probably longer than my arm. Some things helped. Some didn't. Heck, some of the things we tried made it worse. I had the diagnosis of asthma rechecked to ensure we had the right answer. I did as much as you could think of to either ease my symptoms and not need so many medications. I wouldn't choose to be this way. I wouldn't WANT to be this way and desperation has led me to try so many things. I take the advice of a doctor I spoke to once. "Let the doctors do the diagnosis, not other people. Tell [the person] that they should stop trying to diagnose people otherwise they will kill someone."
6. "I'd love to be able to stay at home all day, not work and have everything paid for me."
Again this is one of those things people say to make you feel guilty. Actually, sitting at home and not working is not as great as you would think. I get really bored and there are only so many hours I could dedicate to hobbies or leisure activities. I don't go out much, usually because it takes so much planning and preparation beforehand (how long I go out for, do I have medication, enough oxygen, do carers know I won't be in, that kind of thing). Heck, I do have a job, it is called "surviving". This job means that I have to take on a role as my own nurse, give myself the correct medication at the correct time and attend appointments and collect prescriptions. I manage my pain and breathlessness and I think I do a fair job of it. As for having everything given to me, I wouldn't say that was all that great either. Its hard to explain but I don't enjoy being on benefits because I can't work. I used to work and I loved it. I loved knowing that my money was earned through hard work.
7. "You're too young to have so many problems/ be on so much medication."
Alright then, I'll just go and tell all the children who are ill that they can't be so unwell as they're "too young". The cold, hard fact is that illness isn't picky. It doesn't choose whose life it devastates based on age, sex, race or anything else. Illness happens and it can/does happen to anyone. Yes, there is a larger proportion of age related conditions and going in to hospital can be daunting as you are the youngest in the bay, this is undeniable but there are also people who are ill who are young. Does that mean that they too deserve scorn and judgement? No. Just no.
8. "You look terrible!"
Thanks... You know, I never noticed that my skin is pale or greyish and I have rings under my eyes blacker than the Ace of Spades. I know I look terrible when I don't feel well at all and don't need constant reminders or sympathy. Neither of which won't fix anything. What I need is empathy and to be treated like a human being rather than facing judgement. When someone says these things, I know they're only trying to be caring but really, it just doesn't help in pointing it out. I do what I can to try and hide when I look worn and drained because I don't want people to treat me differently.
9. "You should get more sleep/ fibre in your diet/ fresh air/ drink more water..."
"And perhaps you should stop criticising me and how I live." I live with this every day in my life. I eat and sleep what and when I can and I do try and get out more, weather depending or if it's too cold I tend to stay indoors to prevent things getting worse. I have to tend my needs and I know exactly what I need and when. I try and eat healthy (fruit and veg, not too many takeaways) as much as I can and my illness allows and yes although all these things are important, they aren't a magical cure all. Again, I know people say it because they want to appear like they're caring but at the end of the day, you can't cure an illness without looking at what it is.
10. Nothing. That awkward silence.
Admitting to yourself how you feel is hard. Admitting it and telling others is even worse. It means you have to let someone in and be vulnerable and tell them what's wrong. The hardest thing about it is when you tell someone something, whether good or bad, and they don't say a word or you get a half-hearted "OK". It makes you feel like crap because its like you want to scream "don't care too much! I've only just told you something that was hard to me and you just shrugged it off." Luckily the people I care for and care for me don't give me the awkward silence when I tell them something, but its something I have had happen, it made me feel like crap and like no matter what I said, it didn't matter. So, my symptoms were a little better today? So what? Oh, no big deal, but I just spent the last hour trying to breathe and have an ambulance on the way.
I don't want a fuss. I just people to care, not fuss or be dismissive towards the fact that I have a condition. It doesn't make me less than a person or inferior. Sometimes its as important to emotionally support someone and ask them what they really need or feel. It's also important to listen. Understand. Empathy is important, but it isn't always found. If you do happen to find yourself with someone with an invisible condition or illness, don't be quick to judge. Remember that it isn't always what you can see.
Better things to say would be:
1. "How are you feeling now?"
2. "Thank you for having the strength to tell me, I don't understand completely but I do care and love you very much."
3. "Is there anything we can do to make it easier?"
4. "Can you tell me more about [condition name here]? Or point me in the right direction."
5. "What is important for me to know about your condition, what makes it worse/better?"
6. "I know you're trying as hard as you can."
7. "It's OK to feel scared or upset."
8. "I'll always be there for you when you need me."
9. "I admire you because you never give up."
10. "It's not your fault, but I know you can do it."
I just hope that in posting this, I can break a barrier of ignorance and usher in a bit more understanding and compassion towards other people with conditions. You don't have to look a certain way or have any signs for a condition. Please don't judge what you don't understand, try and learn, understand and help.
Friday, 16 January 2015
I don't think that I have ever slept this much in my life! The morphine makes me sleepy so really its not my fault that I have slept for as long as I have recently. Admittedly the last week has been the week of what I call the 5AM cough. Between 5-7 every morning (maybe because at 6, they did first obs) I wake up and I have a huge cough, shift goo and then take some pain meds and go back to sleep. Its odd but I often feel better after a cough and a chance to clear my airways, I get a lot of rubbish built up (and lately it has tended to be bright green and flecked with blood) and it does feel better to clear it. I will probably always have some degree of chest infection but its firefighting the symptoms as they happen. And that is no easy task.
I do like to keep myself occupied though. Usually it's a craft activity that I can lose my days to. In 2013, I tackled something that I never was able to, I learned to knit. I always wanted to learn, so when Becky encouraged me to do it, I felt really happy. I'm making a scarf with sumptuous, chunky wool which when its finished, will be warm and cozy. I think we can live with warm and cozy, right? There are many other things I enjoy doing, don't get me wrong. Sometimes I like to sew or game and often, I love playing with my pets.
To anyone who asks me, I am not allergic to rabbit or guinea pig fur. My pets actually enrich my life and there's something about how they make me feel loved that when I feel hopeless, they help. Sometimes I do feel like there's no silver lining, I'm only human after all. And there are days when I just feel alone, scared or just have trouble processing everything. Its natural. How could I not? I know people think I'm strong or stoic, but really, I am just making head or tail of my situation. I'm not a superhero and I do have a weakness and funnily enough, I have bad days.
I had a review with my social worker today, as usual she seemed more interested in cutting services. Until I told her exactly what I would usually have kept bitten back. I opened up and was honest. I said I have good days, when I can do things and enjoy myself with the right assistance. I said I have bad days where even walking from my bed to the loo wears me out. Those days are days I can't get out of bed, I sleep most of the day between meds and try to keep myself as comfortable as possible. Its been easier since my meds were altered though. Instead of tramadol, I now have long acting morphine capsules instead. The only thing I don't really like is that sometimes I feel drowsy, especially if I need short acting oramorph between doses. I still have co-codamol but I do make a habit of taking a break from it, I don't get any problems with doing so meaning I have no worries about addiction.
Its going to sound odd, but I don't want to become dependent on things. I'm stronger than that and who knows? Maybe one day they'll be able to cure me completely and I wouldn't need any meds, ever. That would be the dream come true, not having to take pills, nebulisers, inhalers or liquid meds, but until then, I'll keep going and keep my chin up!