Gadgets and Escapology

I'm a girl who loves her gadgets. I always seem to have a large amount of them around me and I think it throws a lot of people off when I take out a phone, iPod and tablet, not to mention my laptop. I often get strange looks, especially when I unpack a laptop in hospital and start watching stuff on it. Most of the time people don't really say a lot but there's been the odd time when someone has griped about it to be met with a "I'm sorry but I'd rather have this than pay £8 a day on rubbish TV when there's often little on." Of course I also keep headphones on me too, my favourite ones are the Skullcandy Ink'd buds (mine are pink too so they won't get pinched, along with my over ear headphones, I like pink, so what?) as they cancel out other sounds (shouting, screamimg, "nuuuuuuuuuuuurse!!" etc, the typical soundtrack to a ward) and can make it easier to sleep, even if there's no music playing.

Usually though, if I'm not watching something, gaming or anything else I'm asleep with quiet music, usually instrumental as the idea of waking up and being stuck saying one phrase for the rest of my life doesn't seem that fun (if you grew up with Cartoon Network's Dexter's Laboratory then you'll know what I'm referring to here...). I know it doesn't work like that but could you imagine if it did?! Some of the songs I listen too as well, imagine ending up only reciting lyrics from Slipknot's songs... Even though there are people who would deserve to have me scream at them like a demonic mad woman, it just wouldn't be good. And I don't think anyone wants to hear that really. I mean if you've ever heard my distinctive cough (I had croup when I was a baby and as a result, my cough sounds like a mixture of a bark and like I'm trying to escape a strange mythological creature), it sounds pretty horrendous as it is.

Thing is, my devices are what I use to communicate with the world and help reduce the isolation I often feel when I'm not well. Some days I'm housebound and it drives me crazy, rightly so too. I don't know anyone who would relish the idea of being kept in what feels like a cage for long periods of time, the same 4 walls. It's depressing and I think that at least with my tablet, I can look around and see what else is happening. Find myself some escapism, even if it's only for a little while. I've found that on my bad days I really need the distraction as well as it's not exactly a fun experience to be unwell and not want to do much. Sometimes it helps to just watch a daft YouTube video, binge watch an anime or read a book. It's better to keep your mind busy rather than focusing on the not so nice stuff because that can lead to some really not so nice situations, ones you would definitely want to avoid.

Obviously I still enjoy things like sewing and drawing, Yu-Gi-Oh and the guinea pigs and the day that that all changes is the day I think something would really be wrong with me. The piggies are very much a part of my mental health therapy and they give me something to nurture and raise. They're not just animals to us. They are family. It's weird actually that Yugi will be 4 in July (he seriously doesn't act like an old boy, he's as mad as the 10 month old, Bakura) and in August he will have been with me for 4 years. It's funny to think that he was this tiny little pup when we brought him back to the flat and watching him grow has been so rewarding. Bakura and Marik came to us last year and they're really coming out of their shells and showing us those little personalities. Marik is definitely the one who has really impressed me as he was so shy at first, now he's a lap pig. I think though that's because of the time and energy we've put in to raising him and earning his trust. Prey animals need to learn that the big human won't hurt them. Just lately, Yugi has taken to running up to us when the door opens, it's really sweet.

I think it's the distraction that things provide that make the days when your body is insisting on kicking your backside less difficult.

Loves
Wendy xx

A Chaos Inside Me

Living with brittle asthma is chaotic. You never know what's going to happen from day to day (and sometimes going between hour to hour) and it can often take you by surprise. Like being tackled by an invisible asthma ninja. Or there are times, like right now, where it kind of starts gradually and  can sometimes be helped other times where you know where it goes. It's hard to explain. I have different types of attack. Sometimes it's aggressive and hits hard and fast. Other times it comes on and worsens over a few days. Neither are easy to manage and ultimately mean that I have to rest, take what I can and know when to wave the flag to surrender.

I once read an article on Asthma UK that said about how brittle asthma is like living on a knife edge. And it really is. You're always trying hard to prevent the next attack from happening even though you know deep down that it's just a matter of time. Then there's the worry that though you survived the last one, could the next be the last? I've had a few life threatening attacks and those were the ones that rocked me the hardest. It makes you question whether you did everything possible to try and prevent it. Did you get help early enough? Then you worry about what could have happened had you just gone with the usual plan of neb and see how it goes. It really rocks your confidence. Almost as though you don't know your body as well as you think you do.

People have asked me which was the worst attack I ever had. It's tied between 3.

One happened when I was 21 and I had pneumonia in both lungs. I don't remember much, only saying I was tired and lay down to nap, next thing I knew, I was in resus with 10 people around me and a nurse using a bag to pump my lungs as they had stopped working completely for a few minutes.

Another was a few years later when I called 999 and a paramedic made an error that had it not been for the staff at the Alex I am pretty sure would have been the end for me. Again, remember leaving the house and then waking up in resus with my previous consultant talking softly to me, saying that he could tell I was exhausted as he was more accustomed to me being a lot brighter and more bubbly instead of curled up and asleep like that.

The third was one where it was me and a rapid response paramedic (who was awesome), we waited close to 1 hour for a truck before deciding that we'd go in the car. Apparently I fell asleep in the car and scared the guy. Again just remember waking up in resus, people around me and a doctor worrying that I wasn't getting better quickly.

Sometimes it's hard though. I mean, how do you know when you've had enough? When you live in a regular and almost constant state of feeling crap and exhausted, how do you come to a decision that enough is enough? As a result, I probably do leave things too late, usually because I always keep asking myself "if I went in, what exactly can they do that's different to what I'm already doing?" as I hate wasting time (or thinking that I do, I know it's not a waste but I'm all for preventing unnecessary admissions). Right now it's a case of rest, take the meds and get help if things get more difficult. I'm sensible about it all at least, learned my lesson a few times over.

I'm OK though, just the usual niggling cough and sleeping a bit more but that's not too worrying in itself, I have Jace here too and he wouldn't let me keep going when it was obvious that it wasn't working so that's one good thing really. It's difficult for him too as not only does he have to see me go through the pain and struggle of asthma on a daily basis but he has to know when I'm not winning despite everything I'm trying. I can't even begin to work out what that's like. Anyone who has known me (bear in mind that I have had asthma since I was 2) has probably seen me struggling at some stage and knows how awful that can be to watch. I even filmed it once but couldn't watch the footage as it was distressing, I looked like someone had sucked all the colour from my face and my breathing didn't sound like breathing at all. I destroyed the tape in the end.

It did get me thinking though about the whole thing from another perspective. One that I had never seen before (I had only really seen it from a first person view).

Brittle asthma is scary.
It's chaos.
It's unpredictable.

I'm thankful that people have been on my side with it and supportive of me.

Loves
Wendy xx

Higher Nature - Natural Inhaler Salt Pipe - A review.

Get it here.

Please be aware that this review is NOT sponsored by Higher Nature or their representatives, but an honest review of their product based upon my on personal experience in using it. It also is not intended as medical advice or instructions, if you aren't sure about if the salt pipe is for you, please speak to your doctor, respiratory nurse or anyone else who can advise you.

Background.

A couple of weeks ago, I was contacted by a PR representative of Higher Nature, a website that promotes natual health supplements and complimentary therapies. I'm a big believer in natural remedies and herbal therapies so it was my pleasure to be asked to try out one of their salt pipe products. For those of you who don't know what salt pipe are, they use a special kind of salt, in this case from the Transylvanian Priad salt mines. When inhaled regularly, this can cleanse the airway and help with secretion clearance, something I personally have a lot of problems with. I was excited to try this as I suffer terribly from chronic chest infections due to not being able to cough up the muck easily.

This review will be written over a week and published when its done. I'll be using the salt pipe for 5 minutes 4 times a day (for 20 minutes total, the instructions say 15-25 mins a day so 20 seems fair) and recording my progress. If you would like more information about Higher Nature and their salt pipe please visit their website by clicking here.

First Impressions:

So when I first got the salt pipe, I liked the design of it, the salt is sealed in a chamber below the ceramic mouthpiece. I first read the instruction leaflet inside the box. It felt well assembled and sturdy, not to mention small enough to pop in my bag if I needed to. I found the leaflet inside was informative and knew that this was a high quality product. The only thing I noticed was that it seemed a bit heavy but considering its construction I think that was to be expected, but considering its longevity, I think porcelain is a more hygienic material compared to plastic.

I did wonder how long I would have to use the pipe before I saw any difference so believe that could have been a bit clearer on the leaflet, and I also had to do my own research in to how it worked and any side effects I had to look out for. The weight did take me by surprise but considering that it is porcelain and will last 5 years, it was understandable. 

Day 1: Saturday:

So, I read the leaflet and started my first treatment. It took me a while to get the technique down (in through mouth and out through nose, apparently breathing out the mouth in to the pipe damages the salt), but I definitely did feel the difference, admittedly I was rather breathless at first as I'd been breathing in a way that was different to usual. I also noticed that after using it for the day, I did manage to bring up some rather sticky and unpleasant stuff that had been in my lungs. I also noticed that night (Jace did too) that I wasn't snoring as badly as I do sometimes.

Only downside was that my mouth was a bit dry.

 

Day 2: Sunday:

I started off day 2 with producing a lot of mucous off my chest. My breathing felt a bit less congested on a whole and I found that combining the salt pipe with my other therapies (nebulisers and even a bit of flutter) meant that I was a little more able to clear my chest. I had to consciously remember though not change my breathing pattern too much but still remember to exhale through my nose. My mouth wasn't so dry though.

Day 3: Monday:

Again, started off with a lot of gunk coming from up from my chest. I did notice that after using the pipe before nebulisers, my chest felt a bit sore but that was easily remedied with my meds. The important thing to remember with these "complimentary therapies" is that they aren't a miracle cure and aren't intended to replace your regular medicines. They do however help to add an extra boost to your regular therapies and help you with symptom control. Salt pipes are particularly useful if you have problems with congestion and secretion build up. 

Day 4: Tuesday:

My airways have been less congested, I've found that the best way to use the salt pipe is around the same time as nebs as the airways are more receptive to the therapy. I managed to move a mucous plug that had probably been there for a while and needed to come up. My mouth doesn't feel so dry anymore and I'm not getting a salty taste on my tongue now. I am finding the technique easier to manage and I'm getting something positive from the experience. It seems to work similar to saline nebs but a lot more is getting down in to the base of my lungs.

Day 5: Wednesday:

More of the plugs are shifting, but I don't know if it's causing me to cough more. It could be the salt being a bit irritating or it could just be my asthma being it's usual self. I'm finding it simple enough to do and find time during the day to sit down and with my salt pipe and use it. So far I'm not getting any negative side effects from it and it seems to help when I'm congested. I could definitely find this helpful when I'm shifting an infection.

Day 6: Thursday:

My snoring at night has improved and as I'm not so gunked up, my apnea has improved somewhat. I can honestly say that it's a quick and easy way to help with clearing the mucous from your airways which seems to be the main thing. Less gunk and more lung to use.

Day 7: Friday:

So, I woke up earlier than usual this morning as I needed to cough a lot. This was not unusual for me as I cough more than anything anyway but once I had finished, I noticed that my airways didn't hurt so much as usual after a coughing fit. It seemed that the inhaled salt had calmed my airways a little. I won't say that it was a complete transformation but it certainly was a pleasant surprise. 

Conclusion:

I am honestly going to say that although the salt therapy hasn't been a miracle cure, it's definitely worth a try if you're congested and have trouble with thinning down the mucous enough to cough up, it does feel like it's done something positive but there were times where my lungs found it a little irritating but that could be my lungs being their usual selves. To be honest I didn't know quite what to expect with trying a salt pipe and I did some research on it to see what I was trying. It seems that these are great for people who are prone to infections or have problems with gunk pooling.

I found the pipe easy to use and once I had worked out a technique with it, it seemed to fit in with the rest of the physical therapy devices I use for chest clearance. It was a bit awkward though at first as you have to remember not to breathe out through your mouth while using it so as to not affect the salt crystals inside. Its a really useful additional therapy but you can't just use that and expect to not need anything else, so if you do decide to give this a try (and I recommend it myself) you must take care to take your normal medication alongside it and you do need to keep at it regularly for the benefit to be felt. Also, it can provoke airway spasms so if you do experience anything like that then you must stop and seek advice.

I thank Higher Nature for the chance to try this product. 

Loves

Wendy xx

Journals.

I was having a look through some boxes the other day. It's amazing how much stuff you end up with when you aren't paying attention. For me it seems to be a thing for notebooks. I have a lot of them. And this weird habit of offloading a few thoughts and feelings before moving on and writing something else in another book. It's something I've always done. I used to buy notebooks at school, fill them with randomness and then get another one. It's kind of like journalling but it's as sporadic and patchy as my mind tends to be.

Some of my notes make sense. Budgets and shopping lists, "to do (often dated)" lists and things I need to get for the house. Its by looking at these that give you a vague insight in to how Jace and I run our place and how I keep an eye on things to make sure bills are paid. Then there's doodles, characters points (for my Midgar stories and some other projects) and general just writing down whatever pops in my head (these are usually random rants about things or things I've had to bite my tongue before saying). Maybe it's just my way of making sense of the chaos. Other times it's to alleviate boredom or stress. Other times I write what I think just so that at some stage, I'll be in a calmer mindset to cope with the way I feel about things. Distance and all that.

One thing I did find was from 2012. When my body was starting to get too weak to cope with moving around and I was facing the prospect of being in a wheelchair. This didn't happen totally for 2 years after this but my mobility was getting worse. It's hard to read because the "me" who was writing it seemed so sad. She didn't want to be in a chair because she was scared that it would take her independence away. How I wish I could go back and comfort her and tell her that actually the chair wouldn't limit her, it would liberate her. And it really has. In fact, my nebulisers and oxygen have both freed me from nearly weekly admissions. My life has been so much better with them and as hard as they have been to get used to, it's been a positive thing. 

I do sometimes wonder what my life could have been like but then it hits me, it doesn't matter so much now because this is what my life turned out to be. I don't feel so sad about it anymore, there's times where it feels unfair but it's then when you sit and remind yourself that you are still alive and you are still doing things, even when you can't see that for yourself. I think it is very much a case of what you make it and really the best thing to do is to just move forward, even if its only baby steps to start off with. When I read my old journals it makes me remember that yes things were difficult then but things are never easy when they're worthwhile, but the main thing is that I somehow managed to survive and live to fight another day. Maybe that's what it is. The knowing that you can overcome things and move forward, even if it isn't easy. But show me something in life that was easy that was worth it. No struggle, no way forward. 

Simple. 

Loves
Wendy xx

Copimg With Life.

People often have their own subjective opinion on what being tired is and no two people can say they experience the same thing when they feel tired. For example, when Jace says he's tired, of keansnhe wants to go and sleep. It's hard to explain what I mean when I say "I'm just tired." Because to me, just simply wanting to go to sleep isn't the same thing. I wonder if you, dear reader, have ever experienced what I am about to explain? I wonder what your thoughts are and what it's like to not feel like this on a daily basis.

To me, being tired isn't simple. My body is so physically worn out that even getting up to use the toilet makes me have to catch my breath. I ache. From top to bottom but it's like my body is still going despite that. Often my eyes don't want to focus and my mind can be just as troublesome. My back aches from where my spine is bent. My stomach hurts because it doesn't want to digest food. My lungs feel like they're about half the size they should be (well, my function is about 40% at most with 65% effective gas transfer due to scar tissue and damage from infections and asthma). I sleep a lot but have to use a CPAP machine as my lungs are so tired after a day's work, along with previous injury to my throat, I have sleep apnea, that's actually mild considering.

I'm still trying to keep doing the same things I always enjoyed. I'm still trying hard to have what could be seen as a normal life. It's hard to admit that things like taking a shower or going to the toilet are hard for me. I guess the best way to explain it would be to think of it like a health bar in a game. As a baseline we always get +10 blocks a day. Normally a person would use 8-9, depending on the activities they do. Someone like me who has health problems is different. For instance, for me, I have to "borrow" blocks from the next day and that can really bite me in the backside. So say I started with 6 blocks. I then have to almost ration my day to make it through without needing to add to the deficit. So often, I have to choose what to do and try and make it work. Once you hit 0 you need twice as much to do things so you're forever adding to that "debt" of exhaustion until inevitably, you crash.

Hard. And catastrophically.

Game Over.

It then takes a week or so of doing nothing and not wasting any energy. Usually for me, it means a trip to hospital, usually a massive bump up with extra meds and literally just sleeping. It's only then that I get to restart and get back to normality (or as close to it as it gets around here).

But just sleeping/ taking it easy/ eating better won't make the problem go away. For example, when Jace gets tired, he just goes to sleep and feels better. For me it literally can take days before I can even function at some kind of level. And it's not like I sleep all that time either. Sometimes I have to find light activities to do and make sure that I'm doing the things I have to. It's not a pity party but more of a survival party. One that I still do my best to keep up with.

And yes there are times when I find myself at breaking point with it all. I'm not ashamed to admit that. There are days where I wake up thinking "And so we start again..." and those are difficult to comprehend. It does make my mind to to dark places and it then takes us both to pull me around again and sometimes I do have to have a good cry, a cup of tea (because that fixes everything) and hugs from Jace and the pigs. They remind me that I'm still here and there are a lot more people out there who care about me than I think when I feel that way, my friends and family are precious to me as well.

So, instead of wallowing in my own sadness and all the bad things, I try and keep positive. Happiness isn't something that you should expect. It's something you work towards and do as much as you need to in order to get it. So rather than being negative and moaning all the time, try and think "OK that sucks BUT this is something good that I'm focused on." Set achievable goals. Pay it forward with kindness to a stranger (if you see someone needs some help, do what you can to help them. Even a small gesture like a kind word or a cup of tea and a sandwich for a homeless person can mean a massive amount) and remember that misery isn't a contest, and it shocks me that people treat it that way.

Loves
Wendy xx

Happy New Year

I'll start off with wishing you all a happy new year and I hope you all had fun and enjoyed the festive period. It's been a quiet one for us here as I have had flu for the past couple of weeks and it's really taken it out of me as it usually does. Flu is horrible for anyone but to someone with brittle asthma it can really be awful and it drains you completely. Not to mention that my body has a really weird habit of overcompensating when it tries to fight anything off. And then there's the complications of flu themselves.

This basically results in an allergic reaction. In my case, it manifests itself with hives. Hives are weird as they are red, they're itchy and they drive me crazy. The first time this happened was when I was in school. It was during PE that my friends noticed that the small spots that seemed to be annoying me all day had exploded all over my body. You name it, they had happened, looking like flat topped bubbles under the skin. I was feeling pretty lousy and one friend made sure I got home, told my then stepdad what happened as I went to lie down. At around 5, I remember my mum coming in as I was sat on the floor (can't remember what I was doing) but I remember how swollen my lips were. Luckily it was just a reaction to a virus but it still happens now, almost 16 years later. It's easily managed with antihistamines and bed rest but it makes you feel lousy.

I was determined though to make sure that I was at home for both Christmas and New Year. I really didn't want to spend a festive season in hospital again. Been there. Done that. Would rather not do that again but of course it's meant being careful. Keeping everything to hand and getting enough rest have been paramount but I can honestly say that I'm not having an easy time of it. I'm back on oral antibiotics again which means there's another infection brewing which explains the exhaustion I feel right now. Another danger symptom which has been happening is the general lack of focus on any one thing. This is probably one of the more annoying things as I can start doing something then after a few moments I'll have given up and started doing something else. It's frustrating and hard to understand and even harder to explain to someone else. I did manage to speak to someone the other night but there's not been much really in the way of conclusion or generally determining the issue. I'm not sure myself either.

Other than the usual health issues, things are pretty much as they should be. The guinea pigs are growing more confident, and I am getting to see those different characters come out. Bakura is probably the naughtiest little fluffball I've had in a long time but that's just a little boy being a little lad really. The way his fluff is growing though is probably the funniest as he has a curl on his face that looks like he's been styling himself like an "Emo kid". He's getting bossy towards the others though and often he's the one who starts (and finishes) any arguements. Then when you pick him up, he becomes like a soft little baby in your arms, definitely knows how to wrap me around his little paws. Since adopting the two, it's been great to see Yugi's interaction with them and I've no doubt that this was the right thing to do.

At the moment, I keep falling asleep sat up so I think I'll leave this here and go rest for a bit.

Loves
Wendy xx

Beating Isolation

One of the hard things about living with a disability is the feeling of isolation and being unable to do things most take for granted. For example, a trip to town needs to be planned. Where are we going, how long, what regular meds to take and making sure that I have an emergency supply and the nebuliser ready just in case. I have to keep everything at hand and make sure my tank has enough oxygen in. I really find it hard to get out and about sometimes but the not for want of trying. I used to go out more but its gotten a lot more difficult. But it doesn't mean that I don't try. You have to try otherwise you risk isolating yourself further, and what's the point in having portable oxygen and a wheelchair of I was just going to lie in bed 24/7. Even when there days when all I want is to sleep until I feel better but I have to be realistic about how much "better" I can get. Brittle asthma is a very unpredictable disease and it really does vary from day to day depending on so many factors.

The one thing that makes it difficult to go out is getting on a bus. Sounds so simple doesn't it? I mean millions of people get on millions of buses a day, but how many of them get on a bus in a wheelchair? Having to ask the driver (who often looks at you like you're dirt) to lower the ramp, asking people to move from the wheelchair bay (despite wheelchairs having priority, there are buggies, some empty some not, and understandably people don't want to put a buggy down, and some people can be downright rude). Then there's the actual ride itself. Redditch buses are notorious for being awful... I guess the less I say there the better. Once we get there though, I love exploring and looking around.

When thinking about isolation, I found myself wondering something rather, admittedly, odd. In Switzerland, it's illegal to own just one of some pets, such as guinea pigs and goldfish. The guinea pig thing I can understand as they are really social animals. When Tristan died, Yugi was alone for about 8 weeks and during that time he became so clingy and just thankful of any human interaction. This happens often when you only have one pig. Patch was alone for 6 months before he got a friend and he was more like a puppy at times, always wanting me to be close by. Since getting Marik and Bakura, Yugi has been a lot happier, albeit he's still very sweet towards his humans.

So you're probably wondering where this is going? Well, after finding this out, I found myself wondering about goldfish. Do goldfish really get lonely? Turns out that they do. I then started thinking about people on the whole. Since the creation of social media (Facebook, Twitter, Instagram etc) we spend more time in the virtual world and it is the most common way that people communicate. Which is kind of worrying to think that most of our lives are conducted through glass screens (much like being in our own personal fish bowl perhaps?) Then I started looking through my Facebook timeline. The most glaring thing I found was the sheer amount of stuff people share online. I'm personally a very private person so don't like to share too much of my private life online. That kind of thing only invites stalkers or gives people the ammo to use later. I find that oversharing your life with everyone to be quite cringy and sometimes it does come across as attention seeking. There's nothing wrong with reaching out but constant moaning isn't going to fix anything.

My general rule of thumb is "would I be happy to do/announce this in the middle of town? If not, then leave it off Facebook". Besides I don't think people want to see "I'm so ill... In pain... Etc" several times a day or the same memes that are about how bad someone has it despite it being their own doing. Maybe it's because I internalise everything  because  I don't like burdening others  with my problems. I also found that Facebook makes me feel more wound up sometimes but it's the only way of keeping in touch.

All this because of thinking about a goldfish!

It was my 31st birthday last month (considering that I was being told that I wasn't likely to see 30 more than once, I've done pretty well for myself) and as usual it's given me time for some reflection on how I've grown over the years. Then noticing that at heart, I'm still that person I was 10-15 years ago. I still love the same things plus loads of new things. I've learned a fair amount of lessons though and there's so much that I would probably tell my 16 year old self to watch for and probably tell her to enjoy herself more. Things will get tough but you know something, you'll come out stronger as a result. Get out, experience as much as you can. Don't let anyone take away that independent streak and stop trying to please everyone else. Unfortunately though, hindsight being a wonderful thing, I did make choices which maybe weren't great really but if I hadn't made any mistakes, I wouldn't have met Jace and we wouldn't have our happy home here. So I guess it's all worked out pretty well really.

As this year comes to an end, it's got me thinking about the next year, what I want to do with it and how much I am hoping for better luck health-wise.

Loves
Wendy xx