For life's little ups and downs.
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.
I'll flap my broken wings and erase it all someday... You'll see.
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!
Wednesday, 14 January 2015
When I was a kid, one thing we did a lot was watch videos. Nowadays you show a kid a video tape, they just look at you with an expression that says "wait, this does what?!" Whether it was a tape recorded off the TV (we got a lot of our favourites that way) or one brought, we would spend afternoons watching them. Some films from that time are still ones I watch now, sometimes on DVD or bluray, others old VHS tapes because there is this amazing nostalgia from watching them. I have some tapes that are over 20 years old and I found them in charity shops, but there is one cassette that I have had for nearly 20 years and nothing would ever make me part with it because it has a huge sentimental value. Even if I didn't have my video player anymore. I do have the film on DVD but there's something special about watching the tape.
Let's go back about 23-24 years when I was a child. This is after I got over my conviction that everything with a mouth needed to be fed (I bet my father cursed my name while fishing bits of jam on toast, marbles and other things I'd popped in to that slot) and when I would watch a film my dad taped off the TV. I think there must have been something so funny about a 4 year old who would often (and dad made a recording all them years ago) burst out in to a full version of Meatloaf's "Bat Out of Hell" suddenly singing along to the film "The Little Shop of Horrors" and I think I must have watched it so many times I killed the old tape!
Of course I did watch kids films and things like "My Little Pony" or "Thomas the Tank Engine". There's actually a rather funny story about the Video Collection company's ident (a short graphic the name of the company and/or TV station the thing you're watching is distributed by) and how it used to terrify me. My parents got so sick of having to coax a scared toddler out and eventually I believe it was my dad who took the tape apart and carefully clipped it to just after the ident, so that I could watch without getting scared! Yet this child who was scared of a 3D geometric TV spinning around and lunging at the screen didn't bat an eyelid when it came to a story about a talking alien plant who ate people, a psycho dentist asphyxiating himself before getting chopped up and fed to the plant and the other rather adult themes in there. I never said that I was a normal child.
One of my earlier memories was when I was about 5, could have been younger though, when I would play a game with the video player. This game was played by me sticking a finger in to the slot, ejecting a tape and pulling my hand away. Needless to say, this went horribly wrong when I didn't move fast enough and my finger was wedged between the top of the slot and the tape. My dad got this top loading player afterwards, I think that my curious nature may have ever so slightly influenced this.
One day when I was about 7 or 8, my mum and dad went to a car-boot sale, my dad liked going and having a look around and we often went to the market place in nearby Penkridge (a small village just outside of Stafford) to snap up a bargain or two. They had something for me and I remember my dad giving me this video of "The Little Shop of Horrors" and as silly as this may sound, whenever I watch the VHS copy, even now 20 years later, it's almost like being a child again. Sure, the tape's worn (especially on some songs) and it's not HD, but to me, that's how I prefer to watch it. It reminds me of when I was a kid (the happier times obviously) and in a way I feel more grounded in myself. We all have those things that remind us of when we were young and sometimes it can be nice to look back at the past and remember those days of being a child.
Its funny really because even now, as a grown woman, I still remember being that chubby, dark haired little girl. Heck, listening to my Linkin Park CDs, I remember the rather awkward teen who had a red Mohawk hair cut and despite the less than fun times, I remember that all in all, I have a lot of good memories of my childhood. Those are the ones I keep hold of. So, every so often, I take out this old tape, pop it in the player and relive those days, when things were so much simpler, before all the "PC" rubbish took away the things we grew up with (things like "Ren and Stimpy").
To be fair, growing up with these things never did us any harm. Natt and I were talking recently and we came to a conclusion. That perhaps it was the exposure to certain things and themes, that are pretty much completely censored, that showed us more of what was acceptable in society and we learned that other walks of life existed and we could tolerantly live alongside them. We saw what human nature can be and because we were aware of it, we allowed ourselves to learn and accept it and not copy the things we were shown and taught were wrong. This is why if I have kids, because who knows, I want to raise them with and show them the things we grew up with.
Sunday, 11 January 2015
I've not really done much since coming home on Tuesday. Actually the main thing I have done is sleep, possibly down to the morphine, and draw. I've really gotten in to my drawing over the last few years and believe my technique and ability has grown. Its nice to find a positive outlet for my moods and it helps me in many many ways. Sometimes you have to find something positive in life to make it feel like a good experience. I don't for one minute call it idyllic but it is what I make it. There's a lot of positive things that have come from being the way I am.
I suppose one way of looking at it is that I have plenty of time to pursue things I enjoy. Whether its sewing or drawing, writing or gaming, I keep myself busy. A busy mind has no time to feel sorry for itself. And that is one thing I never feel, sorry for myself. I'm proud of what I have managed to achieve and aim to do more and more despite my conditions and limitations. I'm not going to be naive enough to believe that every day I'll be a dynamic burst of energy. To be honest, more often than not, my day is broken up with a nap and I do have to rely on my chair (not that I mind my chair, I love it as it means freedom) but I still try and do things, something some in my position wouldn't do, but that's because I am a stubborn bugger and I fight to stay independent. I never ever learned to give up and give in.
Its taken years but rebuilding my self esteem as well as accepting the new challenges my life means has been worth it. If anything I think the chances to grow and mature have made me a better, happier person because it taught me to never take life for granted, enjoy life and generally be a happier person. I'm making the most of it. Its about finding pleasure in things, for me, its my pets. The pigs had a new cage as the bottom of the old one was broken, they love it! There is more than enough room for them to run and play. Since being put in there, Tiggy has done nothing but popcorn and bounce around happily. To me, as a dedicated owner, there is nothing more satisfying to see and it makes me feel like I am doing this right. My pets are spoilt rotten and I know it.
I'm just as always, happy to be here and happy to be getting back on track.
Friday, 9 January 2015
I've been home for a few days now and just getting back in to my own routines and trying to keep fighting this infection. Its a nasty one and its been stubborn on my lungs probably due to the abscessing which happened because it was so prolonged but the problem is, I get so far with it then suddenly it decides that it won't respond to what I'm taking. It's baffled us all and we really don't know what we have to work with. All we can do is keep bashing and bashing on with it and hopefully the consultants can figure out a long term plan.
One thing we did at the hospital this time was play around with my meds. We swapped out the tramadol for Zomorph, a long acting morphine capsule. The idea is to get a constant pain relief level so that I only need Oramorph, which is short acting, for "breakthrough" relief. The only real thing I don't like about it is that every so often I feel so sleepy! Admittedly sometimes a good sleep does wonders but its a bit annoying when halfway through the day I kind of just flop and wake up hours later thinking "OK... Where'd the afternoon go?!" I am really comfortable though so that is at least something isn't it?
I think the best part of being back in my own home is the comfort and warmth of my own bed. I was brought a lovely new duvet for Christmas with pretty black satin sheets (very ritzy and posh) by my mum and my friends made my bed up for me for when I got back. It was lovely to come back home to and right away I felt settled and happy. My friends are amazing. They have been pampering me since getting back and making sure I want for nothing. I was also spoiled rotten while I was in which picked me up so much. Its nice to know you're appreciated. It was also nice to pick up my drawing stuff (I brought some new stuff as my old stuff was running out) and get back in to drawing. Admittedly I have been drawing Pokémon (after catching them on X and Y) but its fun.
I think out of everything recently, I have been besotted with my 3DS. I got it last year and its always played on and I really get pleasure from it. I think I spent more time playing on it in hospital than I did anything else really. It serves as a great distraction and between all the games, it passes the time. Sometimes a distraction can help you when it comes to pain or generally feeling crap. More for the reason that if my mind wanders, I can relax and let my body do the same.
My drawings are a healthy outlet for me as well. When I draw, I almost feel the creatures come alive under my pen, even if it is just my imagination. While drawing Haunter earlier, I could have sworn he winked as I was colouring in his hands and every so often I imagine that Lapras or Bulbasaur made noises from my other book (its my imagination but it makes me smile because these fantasy creatures come to life, even if not for real), and since Pokémon is a colourful world, my drawings are colourful and bright. It does cheer my moods as well because seeing a world of colour is important, I face each day with both eyes open wide and ready to embrace it, for all the challenges to the really happy stuff like spending time with people I love or just being here with my pets.
Speaking of, my pets are as barmy as ever, Tiggy is such a happy boy at the moment, popcorning himself around the cage and the other two just watching him. I wonder sometimes what Scruff would have looked like had he not died so soon, I wonder if he would still be on top of Tenzou like a wig? And other amusing antics.
So, here's to a new year!