Rough Week...

Treatment for certain conditions can be confusing. Heck, I find my asthma as confusing as anything else and its weird, not even the doctors or nurses really understand it and why its being so difficult. Basically for years it has been bounced around more times than a rubber bouncy ball between different doctors, nurses, hospitals and everywhere else in between. 

Since October, there has been a bit of a spike in my usage and that in itself could a sign of things being out of whack and something that needs desperately looking in to. Why are things so much more difficult at the moment? I have no idea, I have constant infections near enough and I am struggling with things like getting up and going for a pee (yes, going for a pee is actually quite physical apparently) or even eating/drinking.

When I was started with o2, I was given it to use as I was generally going around and doing my thing. Up to 16 hours per day and not at night. Then several admissions and several different people saying different things later they then said that I as probably benefiting from it overnight but, as usual another person disagrees and it all goes up in the air again (excuse the pun) and as usual the respiratory nurses leave everyone baffled. Lather, rince, repeat. The one thing that has come of all the confusion is that we finally are getting the sleep study done by the local hospital. I'm not 100% sure on how this will go but if we can get concrete evidence then that's our lives made easier.

At the moment though I'm pretty much in quarrentine as I'm on home IVs. Basically no going out and limiting people coming in, not because of what I could give but because of what I could catch, especially with an open IV line (basically direct access to my bloodstream) and the impact that could have on me. It hasn't been plain sailing either due to my twitchy veins and the fact that I am just so tired as well (apparently getting up at 4 in the morning to neb and clear rubbish off my chest is becoming a norm for us). Jace has been wonderfully patient as always and he has been helping so much with the management of my illnesses and keeping my spirits up as well. 

We lost one of our pigs this week as well which was sad really. Kaiba had a number of health complications himself and had developed an eye ulcer which his poor little body just couldn't fight anymore. It was heartbreaking as he fought as hard as he could to get through it but unfortunately, he passed away knowing he was loved and that in doing so, the pain would be over and he would be free. Unfortunately that has left us with a guinea pig shaped hole to fill and Yugi needs a new friend, something we will be sorting out after Christmas. Until then he has been lapping up extra attention and fuss as well as being given plenty of things to nibble and enjoy. He is a good little pig really, he just needs some company as guinea pigs are social animals by nature. It's never easy when you lose a pet, this is the first one we've lost since moving here but I think that deep down, it was the best thing for Kaiba as he was going to lose that eye and would have never survived afterwards.

I guess that other than Jace and I getting in to a new game, there hasn't really been much going on here. I will write a bit more on the new game we discovered, the Final Fantasy Opus TCG game (the cards... just wow....) but for now, I think I shall leave it here and see where the next week takes us. 

Loves

Wendy xx

Birthday, Family and Other Stuff

Hard to think but the girl who doctors didn't think would see 25 is still here and recently turned 29! OK so I have to use a lot of equipment these days and I spend time trying not to cough myself stupid (easier said than done at times) but I am here. I am still surviving and I am still strong enough in myself to keep moving forwards. I think that the last year or so has been a bit harder than we anticipated but the best thing to have come from it all is that finally after us wanting to get this together, Jace and I are finally working as a unit. Its been great to have someone here to help me and love me even if I am sick or feverish.

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.

Loves
Wendy xx

Crafting and Life

Its the worst time of year coming up for asthmatics. Winter is always difficult for people with any kind of asthma but for someone with severe asthma like me, it is absolutely frustrating. I know people mean well and going out is a healthy thing to do but for me, going out in winter is just asking for problems due to freezing cold and wet or the fact that it is the time of year where everyone is snuffling back a cold or a touch of 'flu (which for me is more than a slight inconvenience, once that cold goes to my chest I am pretty much screwed really), not to mention the unreliable bus service.

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.

Loves
Wendy xx

Its worth it.

Its been a difficult few days for us really. Not because of anything personal or anything like that but because it's been a challenge to keep my peak flow above (or around) 200l/min, usually anything below that is when things get difficult, my best is around 400l/min and anything below that is considered bad. Admittedly since being on oxygen at home, it's been easier to cope with and I'm not struggling as much as I was but then again we haven't been able to get above 250l/min for a good couple of years now unless I've nebbed and been given a ton of steroids. Before I had the oxygen I was unable to even move from bed to chair, each breath I take is never taken for granted. I never realised how much poor lung function could affect my entire body.

Basically if you have never experienced it, it is hard to explain how exhausting it can be. Imagine everything you do taking twice or 3 times the effort than it normally would. Then there's the tired feeling you get with it, like you haven't slept in weeks or months. Its hard to explain to people who don't know that those dark circles around my eyes aren't because of anything other than being so exhausted, and trust me, I have heard some bad ones, including being accused of being a "smack head" which was quite funny actually but at the same time it made me angry because I have never done hard drugs and I never will.  

Jace has been fantastic in helping me with the attacks and pain, even sitting up with me in the early hours while nebs run through (and I am probably falling back asleep usually). The problem with having chronic chest infections is that it can be hard to work out the cause and sometimes you encounter doctors who are so oblivious to how serious things can get. Basically, what I have at the moment is a fungal infection which one of the doctors at the surgery (one who is renowned for being an idiot, I get called in urgently to discuss some bloods and then he dismisses it completely, turned out that I had been anaemic for the past 18 months or so, who'd have thought?) dismissed as "just a bit of thrush" and was "normal". My usual doctor said that when this gets in your lungs its never "just a bit of thrush" and could be dangerous. So its a month of Itraconazole and hoping that it hasn't taken too much of a hold on my system. Last time it was a "if this fails then we may have to look at other options" sort of situation so I really want to avoid that if I can. The fact is, when you only have about 30% of your lungs functioning and at less than normal with gas exchange, you can't afford to mess around with things. I know that something isn't right with my lungs but I just don't feel "that" bad if that makes sense?

It's hard for me to know when enough is enough. I live with this every day, I know the symptoms and what they feel like and I know that I probably put up with a lot more than most would even consider but if I didn't, I wouldn't have a life. My Facebook feed would be constant moaning about being ill and let's be honest, it's an t a positive way forward in life. Does this make my suffering less real? No. It just means that I'm not putting it on others and making them deal with it. I see it in "Spoonie" (sick people, look up Spoon Theory) communities it makes me feel frustrated that people are so obsessed with their illnesses, especially when they have no conditions in the first place (known as "Catfish"). It just trivialises the whole thing. Its hard enough having to deal with long term health issues but when people make it a joke, it's like adding a whole new level of justification to an already stretched situation. I know that you can't always see the battles other people face but when people knowingly outwardly lie, it makes me angry.

At the moment, my aim is to stay away from the hospital for as long as I can. I spent my last birthday in there and I really wouldn't like to spend yet another one in there, especially if it can be avoided somehow. I know it sounds silly but it was a difficult situation last year and despite friends and family, I still felt alone and having an attack that a more demanding patient wouldn't let the nurses deal with was even worse, I have never heard a nurse tell a patient to wait in such a plain way but I am so glad of it because it would have been a rotten way to spend an evening.

All I can say is thank goodness for the equipment and things we have at home.

Loves

Wendy xx

Life is...

I find it weird when people ask me how I put up with it all and how I cope. Like it was a conscious effort on my part to keep going even when I feel exhausted and like I just want to go and sleep for a month or so. To be honest, I never know quiet what to say or how to say it because for me, this isn't just some "thing" I do. It is just simply life. We all have choices in life and some people have the choice to be happy and simply don't do so because for whatever reason they don't think that they can. Of course I am not saying that people don't have difficulties which are often relative to the person encountering them (some people can't cope with things the way others can which again is fine, that is normal).

I find it interesting to see how things can just happen. I think that the biggest lesson I've learned from my experiences is to keep a philosophical view to things and trust my own instincts and intuition. Oh, and to not let the ignorance of others get me down. No matter where you go or what you do, there's always going to be someone somewhere who thinks they know better and no one will convince them otherwise! Fact is, people can lie all they want, some of them are so bad and make no sense and it's really actually quite funny. Best one recently was that down in Abbeydale someone was convinced that my friends and I were always smoking pot (with an oxygen tank, even a moron could put 2+2 and see that this wouldn't be clever but then again, this is a special kind of fool, not to mention the whole chronic respiratory problems or the fact that even when police were called in to search my place they found nothing whatsoever, person was apparently to be done for wasting police time).

The irony in that is that I seldom even drink alcohol nowadays (special occasions only and in very small amounts as alcohol and a number of my tablets do not mix) and have never done hard drugs. I experimented a few times with weed when I was a lot younger but that's about all really. Compared to many my age, I've lived a clean lifestyle. And what oddly enough, I'm proud of that.

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."

During his time here, Jace and I have been able to work around not only my conditions and the limitations they cause but we have learned how to be around each other. Sounds obvious but it's very important to note that even if you're in a relationship for a long time, it can be different when you share the same space. In some cases it can be the breaking point, but in this case it has been one thing that helped us get closer and closer. Jace has also been winning the trust of my little furry judges of character. It's worth saying that animals can often be very intuitive about people's personalities. Usually if the guinea pigs don't trust a person, that's probably because of a good reason. Yesterday, we opened the hutch door to see whether Yugi or Kaiba would come out on their own. Yugi is the more responsive of the pair and he was straight out, coming up and saying "hello" and even allowing us to give him a stroke on his terms. 

Things here are going really well, besides some health issues (the fungus among us has decided to rear its ugly head once more and my lungs seem to have become a holiday resort for it). Since Jace moved in with me, it has been like a new chapter in both our lives has begun and we are both just so happy about it. If anyone told me this time last year that I would be out of Abbeydale and living in a nice bungalow in the nicer area of Redditch with Jace, I think I would have looked at them as though they had suggested that the sky was actually green. Its amazing to see the change in both of us really, both physically and mentally. I think that being happier makes for a better wellbeing and I think that we are both feeling that things are just as they should be. And to be honest, I wouldn't trade that feeling for the world.

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.

Loves
Wendy xx

Always Move Forward.

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.

Loves
Wendy xx

Things are Changing!

It's funny but over the past few weeks, I've made more progress with myself than I ever did in 2 years. I think that moving from Abbeydale to the bungalow (still not saying where it is for privacy reasons) has played a part in that. The biggest issues with the flat weren't the flat, but the surroundings weren't right for me after 5 years, my health and needs have changed a lot and living in flats that are stacking people one on top of another in a loud area (often full of drunk people) just wasn't working anymore. The place we're in now is in a quieter and generally nicer area. The property has more space for us to live in. It sounds silly but it also has allowed me yet further distance from the past as well. I was carrying too much on my shoulders by staying there but at the time it was my home and I won't ever deny that we did have good times in that flat. Sometimes it takes some time and distance to really see what was really going on and how that was affecting me but because I didn't think I could have anything better, I kind of settled for it.

Having Jace here with me is wonderful. He's really taken to caring for me and making sure that I'm safe and comfortable as well as maintaining my independence as much as possible as that is kind of part of who I am. I have been independent since I was 9, I won't let that be taken from me. Its been unusual as I have been so used to my own routines, and when you live by yourself you don't notice the little quirks you have in your personality (e.g. aggression towards the toilet seat). These aren't bad things by any means, we all have our quirks and eccentric natures. Its called being human. But at the same time, I don't think we are supposed to live solitary lives. Its down to finding the right person and you both enjoying each other's company. Even if that is spent while one of you is playing on the Wii-U and the other on the Vita. Its OK because we're still doing things together.

The best thing is that I know that I can trust Jace with things and he is a calm and patient person. He doesn't know exactly everything I am going through for himself but hes been so good and gentle with me. Over the last couple of weeks I have had a persistent fever and chest infection that really isn't shifting well. The last few days have been pretty bad asthma wise and I have been pretty tired and sore as a result. Having someone to spend the afternoon playing games with or just watching a film and cuddling helps though. Sometimes its the non-medical things you need like affection and closeness that can make a sucky situation less so.

The guinea pigs, well they have flourished here too. I can't believe it was just a year ago when I brought those two fluff balls home and how tiny they were! Kaiba looked more like a pom-pom when I first got him and I remember thinking his fluffy fur was so funny. Now he is a big boy (and we know now that he is actually blind as well) he needs regular grooming and trims otherwise he starts to resemble a mop! Its funny when he sits with his hair over his face like "Yeah. I'm awesome" and then plops down in the corner of the hutch. He still hasn't mastered how to climb UP the ramp yet (seems to have more fun rolling down there instead which is actually funny to watch!) but he has time and I have patience with him.

Yugi. Well I remember when I first saw and held little Yugi and he was barely the length of my hand, hyper like all young guinea pigs but the most loving little lad. Hes still that way even now and he seems to know when either Jace or I are up as he will wheek for breakfast and attention. However he is the greedier one of the two and is probably a little on the chunky side (thats OK, he's a pig its kind of in his nature) but he does love to cuddle and he has grown so well and I am proud of them. I am proud of all of my animals. Loki is doing amazingly well too now we are out of that stressful environment and now have a wonderful future coming our way.

Just goes to show. Change is a good thing sometimes.

Loves
Wendy xx