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.
Wednesday, 21 December 2016
People always say things like "You're too young..." and "I've never seen someone with your conditions at your age...." and I don't find comfort in that. I don't like it when people are overly sympathetic, I think that Squall from Final Fantasy 8 said it best when he said "Sympathy is a burden I don't need." and in all honesty, I don't need it. I don't WANT it. It doesn't make things better, nor does it change the fact that things are as they are. You see a lot of what they call "catfish" (people who try and lure others in with sob-stories and try and gain sympathy/relationships/even material gain) in support groups and it makes me angry. I get annoyed because these people are so wrapped up in their own fictitious misery that they waste the perfectly good opportunities out there. Maybe they are caught up in a kind of Munchausen's by proxy or mental health issues, I don't know, but lying about something and praying on a group of already vulnerable people is just awful.
Sympathy isn't the same as friendship.
Yes, it is nice that people show concern over me and I do see the good intentions but I often remind them that they don't have to feel bad for me. I don't feel bad for myself because I know that in some way I am making a difference somewhere. Even if it is by someone reading my blog (and I have had so many emails from people saying how they enjoy it and how it helps them) or Twitter feed.
I am not alone.
I am trying to do something positive. I publish this blog as a way of showing people that just because my body is giving me issues, doesn't mean that I am over and done with. It just means that I am more determined to keep proving myself as a person. I hate it when people who are genuinely sick have to go to great lengths sometimes to validate their lives or "prove" their conditions. It's bad enough that we have to live with it without anyone making that harder for whatever reason. I don't get why someone would want that kind of attention, personally, I hate it. I don't like people fussing over me and I like to get things done without complaining about how bad it was. If I posted on Facebook every single time I had a twinge of pain or a cough it would be the most depressing thing ever.
Instead, I try and think of good things to post about. Like the antics of the guinea pig/s (at the moment we only have one pig as Kaiba left us last week) or a project or game I am playing. I try and keep the good, positive things up because I want people to read my feed and see that there is light at the end of the tunnel and that there are things that can break through the harshness of having health problems. My advice for other people is always "don't let yourself become your condition." and it is something I do my best to keep up with myself. I have asthma, it doesn't have me. It doesn't consume my life and it isn't the only thing I think about. I don't over-analyse everything and obsess over monitoring (because that can only lead to paranoia and hypochondria). I try and enjoy my hobbies and post about those.
Sleeves on decks whether it be Yu-Gi-Oh! or Final Fantasy are important as you are handling the cards, shuffling them (and if you're brave enough to let others shuffle as well) and generally potentially leaving your cards (some of which can be worth staggering amounts of money e.g Legend Dissidia Sephiroth in holofoil can fetch up to £50 on eBay, I was lucky really with that one, I pulled a non foil and got a foil for a bit cheaper as the seller didn't realise what they were selling) to become bent, ragged and completely wrecked. Its a shame when you see a deck that has been completely ragged half to death by it's owner and the cards are so beaten up that they are coming apart, literally. Especially when you see how beautiful they once were. Obviously I keep all my cards sleeved (each deck has a sleeve set so theres no way of "marking cards or rigging what comes out) because I want to take care of them. I want them to last longer and I want people to see them when they are antiques and say "wow, look at the care these have been given."
Maybe it's because I was raised to appreciate things. When something broke when I was a kid, we didn't automatically get a new one. We had to repair what we had and treat things with care and respect. I think that a lot of our "throwaway" culture has come from kids being spoilt and things being automatically replaced once they were broken by rough handling or improper use. We don't just do it with toys or other things either, it seems that people even do it with living creatures as well. I could go on about it but at the end of the day, what will that do? I guess I want to inspire people to respect the things they have and, especially at this time of year, the people/pets in their lives because you can't just replace them that easily.
Sunday, 18 December 2016
Friday, 2 December 2016
I'm not exactly feeling 100% at the moment but I am happy because on Saturday last week, my mum and her partner Dave came to visit and I was finally able to introduce my mum to Jace and it went really well. Of course there is always a bit of wariness when you introduce someone to your family, wondering if they will get on and then when it happens, it was like we were already one big happy family. Its nice because knowing that my mum approves of my relationship is important of course but its good that Jace felt welcomed in as well. I have been with Jace for 4 years now and although there were tough times and distance issues, we are really thriving together now. Which is all I have ever really wanted in a relationship.
My birthday itself was wonderful really. I mean, if you can't do what you enjoy most on your birthday, when can you? We spent the day together doing things we enjoy and I was spoiled rotten really. I know a lot of people would have looked at me funny when they saw how happy I was to be given a Sephiroth card for the Final Fantasy TCG, but that meant a lot to me for the reason that it was brought by someone who knew what such a thing would be to me. It has inspired us to start playing the game and we now have the VII and X starter decks respectively. I also brought some boosters AND the special holograph card of Sephiroth (as well as pulling one from a pack, not foil but still a legendary rare card) which really felt a bit like fate, even more so when I managed to play Sephiroth as a forward in the game and was able to do well with him. The game itself is a bit weird to get used to but once you do get it, its really quite a lot of fun and well thought out. Of course we still adore our Yu-Gi-Oh! games but this is something a little different.
Another thing that was different recently was that Jace got to see first hand what happens when my asthma decides that it's had enough and serious medical attention is needed. The biggest thing with my condition is that like many brittle asthmatics, I can go from being able to live normally to practically suffocating within a moment's notice. This is scary. No, scrap that. This is terrifying. Luckily the attack began at the doctors and I was given a neb immediately, stupid Wendy didn't take her meds early that morning, rookie mistake. After 3 hours at the surgery I was then taken to the hospital and spent 8 hours in A&E before leaving (just as they were ready for me to take up my bed on a ward but I really didn't fancy staying there without my meds, it just wouldn't have been helpful for me because I was already annoyed as the GP tried to first fob us off with "oh its the weather..." when clearly there was an infection brewing, not impressed...at all.)
That was on Tuesday, now on Friday, I am doing OK I think. Jace is keeping a close eye on me and knows now that if I can barely manage 2 words with one breath then its time to get help. We have also been monitoring my peak flow measurements and general wellbeing a bit closer to try and keep things level. So far, I'm not sleeping all day which is of course a good thing but it is a good thing we have increased the quantity of salbutamol nebs per script! All in all, a kind of mixed couple of weeks and hoping that things start moving forward. I am hoping to get my Christmas cards sent out in the next few days too.
Wednesday, 16 November 2016
Going out for me means a LOT of preparation beforehand. Where I'm going, how long I'll be out (what medications do I need to carry/oxygen cylinders) and what I need to do. As a result, I don't tend to go out much but to be honest, there isn't really an awful lot that I need to do. I know a lot of people would be all too eager to brand me as "lazy" or judge me for not going out but they really don't know the full story. They don't know that I spend half my time either struggling to breathe or recovering from attacks. They don't know that we are often up in the night because I need nebs or inhalers and they don't see the effects that chronic lung problems leave you with and it is really hard t explain to someone who doesn't know what it's like because unless you have lived a day in my shoes you really don't know. I'm not going to moan and have a "woe is me" post about it but I am going to acknowledge that things do get tough sometimes.
At the moment I feel exhausted as it has been several days since my asthma has allowed for a good night's sleep. This is not only tough on me though, it is tough on Jace, especially when he has to wake up to put me on a neb and has to see me suffer when things are a bit more difficult (like when my lungs decide that 3 in the morning is the best time to spasm and tighten) and I worry about how he feels in all of this. Thats actually kind of typical Wendy, worrying about the state of others rather than my own condition. Maybe its because it is easier to care for others than to worry about my own condition. Maybe its because I was accused enough times of causing the illnesses of others (I know its shortsightedness on the part of the accusers) but I really don't like being accused of something I didn't actually do. I love Jace and having him here with me has been the best thing for me for a long time. He understands me and knows when I am just saying "I'm fine" when really I'm not.
Currently I have been making sure that everything is as it needs to be. My card making is going really well and producing some lovely results, if I may say so myself. My craft supplies are practically taking over the bungalow though so I am trying my hardest to put things away in a way that is organised and tidy. There is nothing worse than when your craft gear is strewn about and you don't know what is what or where it comes from. I like to be organised and know what I have, how much of it I have and plenty of stock of anything else. Unfortunately the spill over can be an issue so I spent the last week going through what I had, throwing away what wasn't any use to me anymore (which for a craft person is hard to do because EVERYTHING can be used again if you have enough imagination). So far I've made 30+ handmade cards (each with it's own unique design and finishing) and have another 10 or so to finish. I know that they will spread the right amount of joy to the people who get them and I have branched out from my usual circle of friends to others who have made my life better.
The best thing about being a part of a certain community group is that you meet and talk to a lot of new and interesting people. Being a part of Brittle Asthma support and Spoonie groups has been fantastic because not only am I feeling like I'm a part of something bigger and better but I'm meeting and making friends with people who know what I'm experiencing and how I feel. I've made a number of good friends over the years and it feels nice to be able to send them something personalised and pretty to thank them for being... them. My friends are like an extended family and I value people over anything else in this world. There are things in life that are crap but the trick is to not let that get to you and to know that with the right people around you, anything is possible.
Wednesday, 9 November 2016
Friday, 14 October 2016
I look at things in this way because I have no other choice. You either deal with it, or you deal with it. I was dealt what you could call an unlucky hand. That sucks but the thing I did was turn that "bad luck" on it's head and found ways around it. For instance, I find that while I am unable to work, I have more time to dedicate to things I enjoy and find things that matter to me on a personal level. I have found that I have been able to dedicate more time and attention to the small squeaky creatures that I share my home with, and importantly, I don't take those moments of happiness for granted. When you offer your pet a food item and they come right up and take it from you, its a rewarding thing because you know that you have earned the creature's trust and affection. It's even more rewarding when someone moves in and the animals are instantly accepting and friendly towards them. I think that my recent idea of staying positive and keeping things on a positive note may well be finally paying off. I mean, I know its easy to fall in to melancholy and even easier to just stagnate there but I wonder, is that the best way for life? It's annoying that there's so many people who wallow in how unhappy they are about the way their lives are going and usually things are not that bad. Maybe it's just that people like to complain. I prefer to look at things in a way that says "OK. This is what it is, BUT this is how I can make it better."
Living with my conditions means that you have to take things as they are. Sometimes it's good. Sometimes, we have our challenges. But through it all, we see it as yet more to strengthen our already strong bond. Jace seems to really be finding his place here and we have a happy home. OK, my health has been shaky these last few weeks but it's been possible to work around it with what medication and equipment we have available to us. Jace has learned so much already and he understands the signs of when I'm having difficulties. I've been having a few rough mornings the past week but we've been able to calm the things. It's likely that my autumnal fungal infection has decided to rear it's head, but it'll need clarification before we go nuts on treatment.
Its nearly a year since I left the flat and moved here. There are a few things I do miss about the flat but to be honest, the bungalow is more of a home for us. The flat kind of had this temporary feel to it. Maybe it was rushed so much because of that want to get out of the YMCA as quickly as possible as that place was just like a mental black hole. I don't regret the 5 years I was there, I had some very nice times. I do think though that I should have moved sooner than I did as the damp, mould and being too close to the neighbours for comfort didn't do me any favours in the long run but hey, we live and learn. If we knew the best things to do from the offset, we wouldn't ever make mistakes and would never have the chance to learn and grow from them.
For now though, I am going to rest and let my body fight this infection as much as it can.
Saturday, 24 September 2016
In my situation it would be so easy to have a million posts about how crap things get. Maybe it's just the part of my mind that thinks that it's a lot more rewarding and pleasing to keep things positive and if needs be, find a positive if it's not readily available. I notice that people who post about how miserable they are and every twinge don't really get sympathy the more they do it. Sympathy is pointless, it doesn't fix the problem and it makes us forget that we need to put the work in ourselves too.
I'm not saying that people ought not grumble because we all have grumbles and gripes but there's a difference between a little gripe to constant moaning. We get it. Poor health and pain sucks but you can't let that define you as an individual. We are not an illness that just happens to have a person. We don't need to be obsessively checking every tiny symptom or scaring ourselves with "Dr Google". As admittedly you do need to monitor some illnesses but other than that being too alarmist about it will only mean that one day you could become ill and no one will listen (think boy who cried "wolf").
But in some way I think that hypochondria is a serious condition, along with Munchausen's. It recently came up in a support group about someone who told out and out lies about having a medical problem and it upset a lot of people. I think these people are in need of some kind of help to identify why they are so desperate to fill a need with a pretend illness (sometimes it can be something basic like only getting attention as a child when you were sick or people telling you that you're ill and weak so they can control you). Maybe it's because I live with illnesses that make me feel rubbish most days that it does get to me to see someone pretending to be ill when all I want is to get better and not need 20+ medications (probably nearly 50 pills a day, plus liquid morphine, inhalers and nebs and oxygen) just to be able to do things.
The thing is, I know Im not the worst case out there, there are people who are worse than I am and every day is a blessing because it's another day I'm still here and still fighting to survive. If someone said to me "take this and you will never have your problem again" I would with no hesitations. I'd love to be able to do things I loved and go back to work (I miss working as it really did feel lovely to open the bank account, see a wage and think "I earned that" rather than having to rely on the state) and not spend days just flopped about waiting to get well. That day may come, it may not. Of course I would grab it with both hands if someone offered me that chance but for now, my "job" is staying alive.
Jace has been helping me do that, from medications to making sure that if I'm tired, I rest a little. I know it's been challenging for him on days where even though I need to stay in bed, I've just wanted to flit about and do things, main things we did recently was having a complete clear out. Just getting rid of the things I don't need or use, giving away things that can be used again and throwing away the junk because I do have a hoarding instinct at times (typical part of OCD) and it's a challenge to keep that in check. I had to ask myself why I couldn't let go of things, there wasn't much reason for it in most cases and it had just been there at the time. Usually I hoard books, DVDs, drawing stuff and little trinkets, I'm cutting back on it now because this isn't just my space anymore, it's Jace's too. It's not fair for me to make him live amongst my rubbish. We are getting there and it's been a rewarding process from adapting to living with someone in an intimate way and it's one I intend to keep working on.
Move forward, don't stagnate.