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, 30 August 2013

Its Been a Summer

I've been thinking a lot recently, life isn't going to be the way it is forever and sooner or later, a few things are going to change. I don't usually welcome that on the whole, but with so many things changing for good reason right now, a few more changes won't hurt. The most wonderful thing to change is my general attitude and outlook towards life and my urge to just do what ever I like rather than listening to other people telling me what I can/cannot, should or what they are going to do. Don't get me wrong, I love my life as it is right now, but I wouldn't say no to any way that we could make any positive improvements, such as a way of preventing the stream of LRTIs (Lower Respiratory Tract Infections) that have plagued me for nearly a year now. Right now I am battling a pneumonia infection which has kicked the stuffing out of me.

For anyone who is lucky to have never had an LRTI, it is hard to explain how much of a strain it can put on your body, particularly for someone who has brittle asthma. They make my chest feel heavy and the effort of breathing with them puts a lot of extra work on to the muscles in my upper chest, neck and stomach, as a result the smallest things can be exhausting and short distances, like to the toilet and back, can feel like you're walking a mile. Its not a fun thing to end up with and it really can knock me for six and the symptoms always seem to go away for a little while before coming back with a vengeance and the onset is really quick.

Usually it starts with a bit of a cough and my asthma being a bit off. Then as time goes on, it hits with a barrage of a high fever, chills, cold sweats, asthma being way out of our control and bringing up stuff that I am sure would glow in the dark. It does sometimes make me feel like I want to throw in the towel and give in, but then I remember the inspirational stories of others who have been through worse and are still fighting. If they can do it, then what is stopping me? Rather than self pity, I choose to get up, dust myself off and keep walking, even when its not easy. I'd hate to prove any doubters right and I just keep my head above water.

When I'm not well and have to stay in bed, the trickiest thing is finding a way of keeping me occupied.  Because I am the way I am, I need to keep my mind active or I can start to feel depressed and discouraged very quickly. Sometimes that means that I feel as though I'll never win against this but I have to keep going and pushing through the whole thing. I've been keeping myself busy with old Transformers cartoons, games on my iPod and tablet PC (which I have had for over a year now! And it's still as fast and useful as it was from day 1) and laptop. I enjoy playing with gadgets and they really are a welcome distraction on less good days.

Next month is going to be a bit tough. I've got a lot of appointments coming up for a number of health issues including my chest and stomach problems. It's probably going to point to autumn and winter being seasons of medical tests and maybe surgery to correct what can be corrected, if it can get fixed. I'd be happy to at least not be in pain for a while and not have my asthma so complicated. I'm praying beyond prayer that this will be so because when Jace and I begin our next stage together, I want to be as well as possible and able to enjoy our lives together to the fullest. Have faith and things are going to get better!

Loves
Wendy xx

Monday, 26 August 2013

My Brother.

During my hospital stay, I watched a film that brought back a lot of wonderful memories of spending time with someone who I always looked up to, even if at times it didn't look like it. Whenever I think of the times we spent just talking about things or all the times he was there for me, I smile. I'm actually not ashamed at all to admit this, in fact quite the opposite, but I really do love my eldest brother, Richard and he has always been one of the strongest male role models in my life.

I have 2 brothers, Richard and Stephen. Richard, 4 years my senior, lived with our Nan and Aunt, because of reasons I don't really wish to say, and we used to see them every Saturday, and Stephen, who is 2 years older than I am, lived with my parents and me. Stephen and I never really saw eye to eye and I think the main problem is that we just ran out of things to talk about and both grew apart, not unlike our dad and his elder sister. My mum and dad weren't very "touchy-feely" with us, but our nan was. I used to prefer it at my nans because I felt loved and wanted there. Richard was a much more approachable brother and would never raise his hand towards a younger sibling that he believed was stepping out of line.

One thing that helped Richard and I to bond was that at the age of 9, I became interested in "The Transformers". It was something that we always had around us as kids (Richard and Stephen had loved it for most of their lives) and it was only natural that I was going to become just as curious as my brothers about it as time progressed. "Transformers the Movie" is probably one of those films that I can recite word for word, even now. Stephen had a copy of it on video (which he gave to me when he was bored of it) and I would sit and watch it as many times as I could because I really loved the animation and the story. I felt drawn in and even as a child, I remember how scary I found Unicron and how he ate other planets. I remember Richard gave me this Ladybird book of the film and read it to me a few times.

The one thing that does make me remember with a smile is when I used to go to my nans after school as my mum was working late. I'd had a rather horrible day at school and had been feeling really sorry for myself and wanted to cry. Richard took me to his room and we watched Transformers together, after a while I started to open up and I talked to Richard about everything and I told him what had happened at school. I found that as I got older, I was more able to speak to Richard. Yeah we had arguments but that's brothers and sisters for you.

It's his birthday this week and I have something to send to him and I wanted to tell the world that I am not ashamed to say that I love my brother.

 Love
Wendy xx

Sunday, 25 August 2013

A Lesson in Tightropes

*ATTENTION: This is a VERY upsetting post. There were a lot of things that were distressing to me at the time and it was hard to get it down. This is part of the catharsis process for me because its there and then that I can face what went on and get through the aftermath. I have changed some names to protect the privacy of others. Please don't judge me for wanting to get this down and off my chest, this was an event that should NEVER have happened to anyone. Although I cannot fault the care from the staff nurses, HCAs and Doctors on Ward 12 that night, there was one person who made the rest of them look awful. I am pursuing a complaint against that one person and I will do what I can to make sure that no one has to go through something this dreadful again.*

I learn and relearn this lesson often, the problem is that 9 times out of 10, I am often too stubborn or cocky for my own good. Yes, I know my conditions better than anyone else, after all, I am the one living it day after day. I do hate it and I find that admitting that things are so out of sync that the only way for me is in to an ambulance to get seen to. Sometimes its easier to say "enough is enough" and just let the staff do what they may. Most ambulance and hospital staff are lovely but there are some who aren't so nice but that's life isn't it?
I know I left things a bit longer than I should have. I was, I think, determined to pull it around and settle myself. And everyone knows how hard I tried. Before making the call, I was completely withdrawn and spent most of my day either sleeping and doing treatments. Even simple things like sitting and watching TV exhausted me and I was seriously apathetic. In hindsight, I should have called on Monday when I went off and had to do 6 neb before falling back exhausted and in a lot of pain. The weird thing was, I did a tarot spread and it predicted (with spooky accuracy) the rest of my week and what was going to happen.

It all started on Wednesday after half scaring Becky to death by not breathing properly and I knew in myself that I was in for a rough ride. I don't actually remember what I did that day or what I was doing when I went off but I went off not with a bang at first, but a fizzle. Sarah* came in with me just so that I'd not be by myself, Becky had some personal matters to attend to which I was fine about. After seeing doctors and a staff nurse who took 2 hours to do as the doctors asked ("but her sats and fine!!" "stop looking at one number and look at the patient as a whole....!") and I then had the debacle of getting a bed and wound up getting a tour with an oxygen tank between my knees and 2l blowing up my nose (meaning my sats were only fine because I was really compensating). By midnight I was finally left on ward 12 where I tried to sleep but pain was getting the upper hand.

By morning I looked like an extra from a really crappy zombie film. My eyes had sunken and were heavily ringed, I was barely saying much and I was struggling to breathe despite the supplementary oxygen.
Being subjected to 8 hours of pain was torture. That evening my body was starting to shut down and my sats plummeted, I was moving little air and we were all terrified, was this the end? 2 of my best friends came to see me and they bore witness to the whole event. Medication that never got given (I was supposed to be on back to back nebs and only got about 2-3 over the space of 3 hours), because the nurses were so busy with patients being overly needy and a nurse practitioner who was more interested in standing there and discussing this that and the other rather than helping a patient whose oxygen saturations had fallen from 97% to a distressing 89% and then down to 70% for a brief time before the doctor got the nebulisers herself and turned the oxygen up a little. She just branded me as some kind of junkie who was only after pain relief for a high, even though everything showed just how genuine this pain was and how crippling it had become.

All I wanted was to sleep and not be in pain for a moment and I was getting so distressed that I stopped caring as to how the pain was going to stop. After 7 hours I think I decided in myself that I had had enough of it and tried to discharge myself, ripping off the nasal cannula and attempting to pull my IV line out. I was sure that I was going to crawl in to a woodlands, go to sleep and never wake up. The pain and feverishness coupled with my breathing and low oxygen levels had just got to me and I could feel myself losing the will and energy to fight. I got about as far as the end of the bed until the staff nurse and healthcare assistant (who were both so lovely, compassionate and understanding) actually had to put me back in to bed, put my oxygen back on and the HCA stayed with me as I sobbed and tried to comfort me with gentle hugs and sitting on my chair holding my hand and stroking my hair as I tried desperately to be comfortable but I just couldn't do it. I have never experienced pain quite so severe as this and I actually thought that was going to be the thing that killed me.

By midnight, they managed to sort me out some pain relief without that bitch of a nurse practitioner crossing it off. I had been in agony (it actually felt like I was inhaling broken glass and nails) for over 8 hours and the doctor who was asthmatic herself understood how painful this condition really is. I was so tired that I was having to push myself to keep breathing because I was not moving much air still and my body was starting to run out of steam. I was cold, clammy and my heart was beating really fast, the spasms made me flinch everytime I took a breath and every time I spoke. It was thanks to the doctor that I was given a bit of Oramorph just so that my lungs could relax and make the spasms and pain easier to deal with. With the pain gone and other meds given to calm my asthma down and after all of that, exhaustion got me and I eventually went to sleep, I think I had gotten to the point where even if Sephiroth walked in to the room stark naked and started giving me a lapdance, I wouldn't have cared at all.

That was probably the most traumatic thing to have ever gone through. I'm used to swamped nurses, but being told by a nurse to "drink and go to sleep" was just rediculous. I used all the energy I had to almost scream "If it was that easy, don't you think, I would have done it already?" although that was broken up in to 1-2 word segments. Why did she keep crossing things off and refusing to give me medication? Surely what the doctor should have said would have gone? I'm not sure what went on there but I am going to get to the bottom of this, mark my words. I came home yesterday and I am still kind of trying to re-adjust to life outside the hospital. My arms are bruised from blood tests, cannulation, recannulation and a cannula explosion (I managed to leave some strange blood trail from my bed to the nurses station). It's been a horrid week and I am absolutely exhausted, I hope I'm back on the right track, although a part of me is wondering about whether I left the hospital too early, but I could see that they would need the bed for another person eventually.

Loves (and gratefulness)
Wendy xx

Sunday, 11 August 2013

Freedom!

Maybe it's because I can finally feel safe again, but I am actually glad I had the courage to actually come forward and do something about a persistant problem that has been a bit of a nightmare for the last 2 years. Today when we went out, it felt like a huge weight was gone off my shoulders and I could just get back to enjoying life and not have to deal with someone who should have gotten the picture by now. I do feel annoyed that it had to get to this point, but there really are limits to how much you can actually take of something and I had finally reached that limit.

Now thanks to the Harassment Warning that has been issued, this person will no longer be able to try and approach me, contact me via E-mail/social media/blog comments and they are not allowed to blog about me or mention me by name in their blog (I was pointed to their latest rant by a reliable friend, and I have taken the screenshots as requested by the police officer to help us build a case to get a criminal Injunction served on this person, which is kind of like a restraining order) unless they would like to be liable for arrest, being charged for stalking and harassment (yes it is a crime) and even running the risk of serving time in prison if they carry on causing or trying to cause trouble. When the police officer called me yesterday and told me that the warning was served, I felt elated and like I was finally going to be free of this. Although she did mention in amusement about how they tried to get me in to trouble for "endorsing kidnap on an 11 year old child" (it was so stupid that everyone who read it all agreed that it was the biggest load of bullshit that had ever been spoken!) and we did have a chuckle about that. In her words "he didn't like being told that he had done something wrong and wanted to try and get you in to trouble, it was quite childish really!"

I knew I was in no real threat of getting in to trouble (it helps being friends with a barrister) and that all this was really was a rather flimsy attempt to make me think "oh no, maybe I should drop the charges..." which for that person backfired spectacularly. I do hope that for their own sake that they heed this warning and take it to heart that I really don't want to have anything to do with them and I am actually moving on with, and enjoying, my own life. There are going to be some changes in the next few months (more on that as things develop, but I think one thing will be a pleasant surprise) and I am really keeping positive for those reasons.

To be honest, it isn't often that you meet people who show you the way, especially when you feel so bogged down that you can't seem to work it out and the map seems like a blank page. So when I met 2 people who did that for me, it was probably the start of my return to the person I always tried to be. On my good days, we laugh together and we have fun, whether its something like a trip out somewhere or just curling up on the sofa and watching a daft film and on my bad days, they pick me up and help me to find a way to keep going, even if it hurts or I don't know how I'm going to do it. They take my crap when I feel frustrated and I take theirs. We support each other and always work on the ideas that you should never go to bed angry and its easier to admit when you've been a jerk than keep trying to ignore it and pretend it never happened. No matter how hard you try, you can't get on all of the time, but it shows a great bond when you can get angry with someone and then forgive them and they forgive you.

I am glad that I finally managed to stand up for myself and stop this because it was becoming rediculous.

Loves
Wendy xx

Saturday, 10 August 2013

Harrassment Warning Issued.

I'm glad to have started to move certain things on and its reassuring to know that someone out there is listening and no matter how much someone believes it to be the case, I don't have to put up with stalking and harrassment. I'm not going to allow myself to become a victim for anyone to push around. I neither want to or have to anyway. I'm stronger than this and I am stronger than some people take me for. It helps as well that I was transparent with the police when I started the ball rolling on this. I showed them everything from a certain conversation (the one which made this person accuse me of "endorsing" some kind of kidnap, this is what we call baseless conjecture) to all the lovely emails and other things that were sent and I stowed away in a file on my computer and iPod so that if it came down to it and it did end up in the courts, we have a shed load of evidence to back us up. This person will get what they deserve and they won't make me feel threatened ever again.

I think it has been a weight off my mind and something of an uncomfortable subject as its been going on for 2 years and it's all started because I decided that I didn't want to be in a relationship where I was miserable and couldn't live like that anymore. Yes I got the flat, which we only got because of MY support worker and the forms *I* filled in and even the council had said that I was the one entitled to it as my flat is "adapted for the disabled", I got my DLA and ESA to support myself (something that hasn't been going too badly if I do say so myself) and because of the things she does for me, I trust her enough to claim Carers Allowance for me as she does care for me and she isn't simply cashing in on my illness for her own means, like so many others would had they been given the chance. I paid off the "White Goods" from Penny and am now just paying off the scooter that she and my doctor helped me to get. So in short, the things I got to keep, were either mine or my entitlement to keep in the first instance. In fact none of the things I was actually accused of are true, it's just a childish attempt to try and get me to suffer in silence.

I abhor bullies. They're cowards and they are a waste of space. Especially ones who try and prey on the weak because they know that if they tried it on someone who wasn't as vulnerable, they would be the ones to suffer. This person stooped lower than that, he tried to bully someone who is disabled and vulnerable, but you know what? I let that person make me miserable before, I won't let them do it again and again, I'm not a victim and I refuse to allow myself to be treated like one.

Friday, 9 August 2013

I'm going to murder my laptop!!

I've come to the conclusion that Bahamut (my laptop) is trying to mess with me a bit. I love my laptop and for the 3 and a 1/2 years I have had it, I feel that it is a worthy machine to replace my old one. I think that it, like most things has developed a number of quirks to.keep me on my toes, but there are times when it just does something at random and I sit there wondering just how intelligent are computers these days?!

The other morning I was awakened at half past 6. Despite it being tucked just under the bed where I usually store it, reason being its out of sight and if anyone tried to take it, I'd know and wake up right away, it turned itself on despite not having a lot of charge in the battery and all I heard was "boooop!" every few minutes. So I was up early for a doctors appointment for my chest (it's been giving me all kinds of bother recently) because what we were thinking had started with a kind of summer flu bug has just gone as usual to my chest. Not very nice at the best of times.

You know you must look and sound rough when the doctor doesn't even need to listen to your chest to know you're not quite right. So long story short we're kicking it away with 10 days of Cipro (Ciprofloxacin, try saying that quickly...) and very strict bedrest and get help when I need it. The biggest issue has been the inflammation inside which causes pain on breathing in, but that does pass eventually. I think the dead giveaway was I wasn't my usual bubbly self and I couldn't even find the interest to put my ipod on.

Our neighbours have been helping while Becky visited her mum for a few days as she does every summer. Afterall everyone is entitled to some time off, it's only fair.

Sarah* and Nick* are lovely people who have had a stint of rough times, I pay Sarah to help us with general housekeeping a few times a week. Of course I play with their little girl and keep her entertained. I love kids, well sometimes its hard to keep them amused and not all children are good and as well mannered as Ino* (* names have been changed to protect their right to privacy, not that they asked to be protected but as there are a lot of dodgy people about, you never know) and she's a funny little ray of sunshine.

I've always said that my life isn't perfect but it is still good. We may only live in our one bed flat but it is our home. Always full of laughter and random conversation about things. Its the people in my life that give me hope and a certain sense of confidence and I couldn't ask for more.

Loves
Wendy xx

Saturday, 3 August 2013

Proud.

I am so proud of myself, but I do believe that some of the credit is owed to my readers for acknowledging my blog and helping me see the light inside of me. With all my page views and positive feedback it really is the people this blog reaches that keep me writing. Even in the 2 years of writing this, I have grown as a person and you guys have all been there through the highs and the lows and its been both cathartic and fun to keep this blog, and I will continue to do so as I am really feeling as though I am achieving something special here.

When I started this blog, my couldn't be more different. I was in a place that I was miserable and I wanted so much to believe and hope that my life would be more than this. It's taken me through moving house, turbulent relationships and more attacks and nebs than I care to mention. I promise to my readers that you will continue to read about hope, humour and how I intend to make this work!

Loves
Wendy xx

Safety

The most pleasant thing about the last few days is that I recieved an email from Health Central saying that my blog is among the top 11 asthma blogs. It's a huge honour and a privilage to know that my little blog reaches as many people as it does and it really makes me glad that this blog was made. I've had so much positive feedback over the last few years and it's good to tell my story. I like that people know that disability doesn't always affect the elderly and that there are so many people under the age of 30 who live with a long term, life limiting illness or any other kind of disablility.

I was talking to the Shopmobility people in Redditch, they agreed with my campaigning to make the voices of us disabled youngsters heard. I'm also planning to do some voulunteering (mainly on events just holding a collections tin) for them in the future. It's a worthy cause and something I personally believe is wonderful. They help people with disabilities to enjoy something simple, like going to the shops and enjoying days out in the town centre. I know for myself that getting around when you're sick or unable to walk for any other reason is difficult and sometimes very painful or risky. And many don't have the means or wonderful friend who can help them to get thier own mobility aids, like a wheelchair or scooter, so to hire one is liberating.

Since getting my scooter, I have been so much happier. I can get get where I need to and have been so much more independent and happy. Going out to town to get things isn't a chore anymore and its a huge pleasure. I went to town earlier today and I was enjoying the fact that I could get about without getting so short of breath that I would have to take my inhalers or nebulisers. I've not felt this free for over 3 years. I felt like a prisoner of my condition which made me miserable and isolated. So many people who have health problems feel that they can't relate to the rest of the world. I can say I understand that feeling as for so long, I felt lonely and like I couldn't relate to friends or family. Maybe I was ashamed that I had gotten to the stage when even the smallest tasks made me struggle to get my breath that I didn't want to see people and I did get more depressed.

I'm finally liberated myself from a persistant pest that had been trying everything they could to hurt me or ruin my life. I have finally managed to get something done because the stress of it was affecting me emotionally, physically and making me frightened to live my life. But now something is happening so that person will not be allowed to bother me, and if they do, I have the grounds (and the will) to call the police. I hate that it has come to this and it is such an annoying thing but what this person is doing is a crime. I was completely transparent and showed them 2 years of emails, blogs slandering me and everything else this person threw at me, and I showed them any replies I foolishly made. The problem is that if you want something done about something, you sometimes have to reach out and ask them for help and you have to go with your instincts. I feel liberated and I am finally getting the peace of mind I deserve.

I guess now its time for me to relax, laugh and feel like I ought to, with a nice drink (non alcoholic obviously) and the feeling of assurance. 

Loves
Wendy xx

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