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 Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) 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 and CPAP.

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

Wednesday, 29 March 2017

I think that if you have a long term health issue, you are going to have days where you just want to dive under the covers and not move. Even with my efforts to remain positive and pragmatic about things, when I have a rubbish day due to pain or my asthma being difficult, I do have the urge to curl up, turn off everything and just try and muddle through. The thing no one ever warns you about is that sometimes things aren't going to go the way you want to them to and there are times when you will feel the sting. 

Today was one of those I think. I woke up feeling out of sorts and it never really got much better as the day went on. I've been feeling like crap while fighting this fungal infection and it's been one of the hardest to kick off. I'm on my last couple of weeks of itraconazole and I'm hoping that this feeling I've got is like the infection's last stand before it leaves. It had started to affect other parts of my body as well which was not nice at all, I'm pretty sure that the worst parts of the skin are now scarred and it took a while to flush my waterworks (although giving up regularly drinking fizzy drinks has helped, a lot with that and my Crohns hasn't been so painful either so that's good) but it's not going to win this one. 

I recently gave up on fizzy as I noticed how expensive a habit it was and how much of a waste of money it was too. When I moved in to my bungalow, that new year I had resolved to cut energy drinks from my diet completely, after all, they are really bad for you and all the caffeine was probably part of the sleep problems I have. I'll admit that the withdrawals from it were tough and I had headaches for a few weeks. There were times when I wanted to say "Sod it" and to and buy a crate but I'm glad I didn't. And now I'm not even drinking things like Coke or other fizzy pop on a regular basis, I'm noticing a few things. My teeth look better and I'm much less jittery, my stomach isn't full of gas so I'm not so distended around the gut and my moods are stable too (I asked a doctor about this before, they said that energy drinks can have a profound effect on certain parts of bipolar, especially manic episodes). 

I did have an interesting phone call from the oxygen nurses. Basically if you're on home oxygen they send someone in regularly to review you, make sure you're not over or under using your oxygen equipment and that what you have is fitting your needs. Home oxygen is a delicate thing because if it's mismanaged then it can actually do more harm than good. My nurse and I spoke at length about the issues at night, some of which include desaturation and sleep apnoea, which was never formally investigated and they had only had what info they could get over a year ago which wasn't even accurate as it was when a consultant was actually trying to ignore my conditions and refusing to listen to me, other consultants or nurses. Funnily enough the prat doesn't work for the trust now so we've looked in to what and why things happen the way that they have. I'm glad we did, even though it was difficult and it's brought about some life changing results but it was ultimately a huge "I told you so" moment. In fact, they now have the information and clinical indication that the stupid guy tried to cover up. It was a bit of a hollow victory though because it kind of removed any kind of doubt or deniability on everyone's part. I just hope that this will lead to something being done to help and maybe even getting a decent night's sleep for a change. 

Last night was anything but decent. I was coughing up stuff. To be honest, it is nothing really that strange in itself but it was more in quantity than usual. I literally felt like I was trying to cough up a lung or two and it did get (and still is) very painful so I have had to be careful today and keep up doses of pain meds and other things to make sure that this causes as little bother as possible. The problem is that I am physically and mentally worn out and just want to curl up and sleep, which is difficult when you're in pain. I'm a little worried that a ride with the men in green may be on the horizon but I'll do what I can before I let that happen. Especially as it's someone's​ birthday this weekend and I want to make it the happiest I can. 

Wendy xx

Tuesday, 21 March 2017

Tough Week, More than likely to continue

Ever feel like you're chasing your own tail when you're trying hard to work around certain personality flaws or issues. I am very aware and I know that I suffer from OCD (Obsessive Compulsive Disorder, and NO, it isn't just an obsession with cleaning) and it manifests itself in ways that are a little bit odd for most people to understand. A part of my personal OCD (apart from the excess use of hand sanitiser) is that I am always apologising to people for everything from moving slightly (because I think that I inconvenienced them) to simply asking for help or for a drink or something (because in my mind I always think "Who are YOU to ask anything of anyone. You don't deserve help.") and its even happened as a result of calling 999 during my asthma attacks. It's a tic I've developed as a child that has never really gotten better.

It's annoying. It's frustrating. It even makes me aggressive towards myself if I try to stop it (I have been known to self harm from pinching myself to slashing my arm open with a huge knife.) and it's sometimes hard to prevent. It's like, if I don't keep apologising. I am scared of something bad happening.Usually because when I was a kid, when I didn't apologise constantly to one of my brothers I was "taught a lesson" or "disciplined" in any way that he saw fit. I don't really want to go in to the full story as I find a lot of it is hard to think of, even now after 16+ years but it left a mark on me, inside and out. Its hard to think about and its hard to even put in to words because I know that it makes some situations more likely and there are people out there who have taken advantage of this. Usually when it involves them gaining money or possessions from my vulnerability and my own generally wanting to avoid being "punished" again.

I won't go in to that now as it isn't really worth chewing over again and again, I would much rather keep on moving on with life because it's a better way around things. Besides, it annoys the people who try and make you out to be the "bad one" all the more if you keep moving with your head held high! I made an active decision nearly 6 years ago now that I would not let anyone make me a victim. I've moved on so much over the last few years and to be honest and most of that has come from when I left the old place and moved in to the bungalow and it has just gone from strength to strength since Jace moved in and our lives became shared with each other. To be honest, when I left the flat that last time, it was like closing the door on a chapter of my life and I've improved mentally since leaving it behind. I think my aim in things is to keep striving forward, learn from the mistakes (and I've made my share over my 29 years) and not repeating them. People who hurt me are out of my life for good and they aren't ever going to get back in. To put it bluntly, to let someone who made you feel that way back in to your life is like scooping a poop out of a toilet and pushing it back up your bottom! You just wouldn't do it. Or I would hope!

It isn't just the mental stuff that has given me trouble recently. I think it's just the fact that I have had a really bad infection and that I have been feeling a bit worn out by the smallest things (typical for me when I get these kinds of infections really) and it is just taking a toll on me a little. That's OK though, infections take time to heal from. I was also thrown a bit of a curveball by my review with the respiratory nurses at the hospital. To cut a long story short, we needed to work out what was happening with my oxygen levels and in a weird way redefine the clinical indications for my oxygen (it got a bit muddled as there wasn't a lot of data to go by from recent tests, actually parts of my records went missing and the nurses were using old instructions to work out what the doctors wanted, it's embarrassing that they quote one letter a year before they saw me and I had seen the consultant since then, no copies of EDS and a great deal of inaccurate information) and general breathing when I sleep. I snore. I snore terribly sometimes and I'll be honest, it is really embarrassing because it is so loud. The other problem which Jace (and other people have pointed out, but why this was never looked in to I have NO idea, think someone dropped the ball here) that I stop breathing in my sleep.

Annoying thing is that I had to ask for the study to be done just so that we had the evidence of what I have been saying for years. The study we did pointed to low oxygen levels at night and sleep apnea. I wanted this sleep study done because I wanted to put things in line and get everyone singing off the same song sheet. Now if only my CT scan from 2 years ago had more available to view than a 1 line report saying that I don't have bronchiectasis and this was all shared with Heartlands (other than copies of the test results that I brought to them) as well as the planned admission which they wanted to do 2 years ago (but haven't had a bed spare), we could be well on the way to a more effective treatment plan and a vast improvement​ in my quality of life. I don't want to be tethered to this and that and I would give anything to be tube free.

SA is basically where for whatever reason the airways collapse when you fall asleep and your lungs are working extra hard to supply your body with oxygen. The body does counter this in the way of making you wake up a little (often with a rather harsh snort) and the result is that you don't get enough decent sleep. Obviously this in itself has its own set of issues and not sleeping can really have a dramatic effect on your physical and mental stamina . The nurse explained that because of my lungs being as they are and now this, it's like I'm not able to charge my batteries so I'm pretty much like a laptop that can't​ hold a charge. So that explains why my oxygen levels take a nosedive at night and I wake up feeling like I hadn't slept, which of course exacerbates my other conditions and it becomes almost like a domino effect. Because everything feels worse when you haven't had a good night's sleep. So once the doctors decide the best plan for me, I will be starting on CPAP (continuous positive airway pressure, a type of non invasive ventilator which will involve me wearing a mask that will force my lungs to stay open). I'd be lying if I said that it wasn't bothering me but this is life changing but I have to see this as a step forward rather than a setback.

Wendy xx


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