For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

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.

About Me:

A blog about life. I live with Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Various Allergies, Neutropenia, Chronic IBS, Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen.

I'll flap my broken wings and erase it all someday... You'll see.

Friday, 17 February 2017

Overwhelmed

One thing I have learned through the last few years was that if there was nothing to worry about, usually they don't push for follow up. No news is often good news. I think its a bit of  a worry when something comes back from a test, especially when it is related to my respiratory health. My lungs aren't getting better, and I know all too well that there's a distinct possibility that they never will. Does this scare me? Of course, but it makes me more angry than anything. But it also makes me determined to defy the odds as I already have. The doctor was sure I would never get to 25 and here I am, still here.

I'm sometimes angry because I see all the people I went to school with, they are living their lives, be that from getting married, ticking off items off their "bucket list", travel or parenthood. I feel angry that because of this disease and the things that made that worse, I probably won't know too many of my dreams. I don't blame people for having wonderful lives, in fact to follow some of the people I grew up with and seeing them as they are now is amazing. I guess the thing was that at 29, I didn't ever expect to be constantly battling chest infections, struggling to even breathe or do every day things. I definitely didn't expect to be disabled to the point where I am practically stuck in a wheelchair and relying on oxygen and nebuliser medication. Maybe it isn't really anger, maybe its a little bit of jealousy because my life didn't pan out the way theirs did but that doesn't take away from everything I have managed to achieve in life so I suppose it balances out.

I don't see the "enhanced rate" of PIP as some kind of bonus. I don't actually WANT to have to have extra money from the government, yes it helps but it also makes me feel sad. Sad that I have to rely on this kind of thing because I can't go out and do the things I want to do. I like to work. I like to keep busy. I hate it when people tell me how "lucky" I am to get high rate disability benefits. I'm not lucky. I'm anything but. I hate it when people say "Oh well, I wish I could get as much as you get on benefits" but it only fuels the anger I feel inside. It makes me even angrier when people attempt to take advantage of me but that is a whole other kettle of fish.

So recently I had a sleep study done. This basically involved me having to sleep while wearing 2 pieces of monitoring equipment. One was to measure the respiratory output while I slept, including how much effort my body makes to breathe, air flow and whether or not my poor sleep recently is down to my lungs basically not liking to work anymore. My lung function is around 30-40% on a good day and on a bad day it is closer to 20-30%. That is scary because it doesn't hit home until you attempt to do some seemingly normal activity and then it knocks you for six. You never realise that something as basic as brushing your hair or taking a shower can be exhausting. Basically I may have to have a machine to help me breathe at night although my oxygen levels at night were also something of interest, I will find this out in March. The main thing I am concerned about is the results of a sputum culture that I had done last week. The results came back quickly (which they always told me was a bad sign) and they have called to discuss this. I feel a little wary as to what was found but in a way maybe that is a good thing because if they know the enemy, so to speak, they know the best way to fix it.

So right now I am struggling with an infection of Candida in my lungs and a heavy flu. With brittle asthma as well, this makes for a really vile cocktail in terms of how it makes you feel. I ache. I feel hot/cold. Sweaty and shivery and of course totally sapped of energy. Basically to put it in words, it feels rubbish but to be honest, at least we can get something sorted and after some help I will be back on my feet in no time at all!

Loves
Wendy xx

Its overwhelming really because there is so much already going on and I really can't stop what is happening altogether and focus on one thing, it just doesn't work that way. It's all come at once really and I feel kind of powerless to do anything about it. I know that I have to keep going and push through it but I feel like I just want to sleep for a month or so.

Saturday, 21 January 2017

No Quick Fixes...

Although my asthma usually spends most of the time in the limelight (as it is my most dominant and severe condition), there are times when other conditions I suffer with can show me how much of a pain they can be. My health isn't a simple case of "take this pill and get better" and I know this. In fact, there aren't any "easy" answers to all of this and this is something I have had to learn to live with. Even if it seems harsh and unfair. The worst thing about a lot of conditions I have is that there aren't any magic cures to make it better and often it comes down to just managing it and firefighting the symptoms as they occur.

Right now, it is one of my lesser conditions that is causing me a bit of grief. Since I was 17, I have had a condition that a lot of women have called "PCOS" or Poly Cystic Ovary Syndrome. Basically it means that my ovaries become covered in cysts. Some of these are harmless and go away but lately, I have had a particularly bad one on my right ovary. This one seems to be aggravating my IBS (Irratable Bowel Syndrome) and as a result, I can't really face the idea of eating as it feels like rocks going through my gut. There are other issues around it as well but as you can imagine, theres only a certain degree of graphic that I think should be here. Lets just say this, I am glad for the grab bars in my bathroom or I would have nothing to grasp during particularly painful moments!

Having IBS means that of course, I have to be careful of certain foods that "trigger" the issue. Dairy seems to be the big one for me and often eating milk or dairy can result in some volatile reactions, cramping and (embarrassingly) wind. It can sometimes be so severe that I would happily eat nothing at all for a few days than have to suffer the pain of actually digesting food. This has been a bit of an issue recently and as a result I feel run down and really not well in myself. It doesn't help that my mind is giving me issues as well and I have spent the last month constantly apologising to people (mostly to Jace, even for something innocent enough like reaching over to get something or just moving slightly).  It is a bad habit of mine and I think it is a part of me thinking that I did something wrong when I probably didn't. I get very upset with myself more than anything I think.

When I get run down, that's when my asthma really gives me cause for worry. I think that my general health is off colour at the moment and this worries me quite a lot as there is so much going on around me at the moment too. I kind of feel like I can't get this right and that I am unworthy of anything, my personal confidence is currently down but I am trying my best to make this better. Even if it seems hard at times. I'm trying to find positives in things even on days where I would sooner just crawl in to a hole and there are days like that when things just seem to mount up. I feel at ease now because the things that I was concerned about are sorted and things are getting better. Thats the thing about life, as many curveballs as it throws, it also throws good stuff your way too, you just have to keep your chin up and remember that you have beaten things before. You will beat them again.

Oh, and give yourself something to look forward to. For me, its the Sephiroth promo foil card that Jace helped me negotiate with a seller for. There were only 60 non-foils given out and about 20 foils so this card is rare, its beautiful and its going to enhance my deck in ways that we could only dream of! Of course this also means that I now one of each Sephiroth card currently available!

Loves
Wendy xx

Wednesday, 21 December 2016

Loose Ends.

I finished my home IVs today and to be honest I am both glad and a little concerned. We no longer have to worry about dangling lines, sore IV sites and the eventual pain of when the vein says "nope" and shuts down entirely. The thing is, I am not magically better which is what I am struggling with, the idea that my "baseline" has changed and things aren't bouncing back the way they were. This actually terrifies me because although I know that I am not as young as I was and my body has had to deal with so much over the last 8 years, it doesn't make it any less real.

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.

Right now, our latest thing has been the Final Fantasy TCG. Jace has a deck based on the Final Fantasy X set and I have Final Fantasy VII (of course). Right now I am working on different variants of the VII deck (Starter, Classic, Remake, Crisis and Advent) which will grow in time as more cards are released. I did however treat myself to a Final Fantasy VII Advent Children playmat and sleeve set which look absolutely incredible! Typical high quality as well that you would expect from Square Enix and the sleeves are amazing as well.

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.

Loves
Wendy xx

Sunday, 18 December 2016

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

Friday, 2 December 2016

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

Wednesday, 16 November 2016

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

Wednesday, 9 November 2016

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

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