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.

Saturday, 24 September 2016

Always Move Forward.

In my situation it would be so easy to have a million posts about how crap things get. Maybe it's just the part of my mind that thinks that it's a lot more rewarding and pleasing to keep things positive and if needs be, find a positive if it's not readily available. I notice that people who post about how miserable they are and every twinge don't really get sympathy the more they do it. Sympathy is pointless, it doesn't fix the problem and it makes us forget that we need to put the work in ourselves too.

I'm not saying that people ought not grumble because we all have grumbles and gripes but there's a difference between a little gripe to constant moaning. We get it. Poor health and pain sucks but you can't let that define you as an individual. We are not an illness that just happens to have a person. We don't need to be obsessively checking every tiny symptom or scaring ourselves with "Dr Google". As admittedly you do need to monitor some illnesses but other than that being too alarmist about it will only mean that one day you could become ill and no one will listen (think boy who cried "wolf"). 

But in some way I think that hypochondria is a serious condition, along with Munchausen's. It recently came up in a support group about someone who told out and out lies about having a medical problem and it upset a lot of people. I think these people are in need of some kind of help to identify why they are so desperate to fill a need with a pretend illness (sometimes it can be something basic like only getting attention as a child when you were sick or people telling you that you're ill and weak so they can control you). Maybe it's because I live with illnesses that make me feel rubbish most days that it does get to me to see someone pretending to be ill when all I want is to get better and not need 20+ medications (probably nearly 50 pills a day, plus liquid morphine, inhalers and nebs and oxygen) just to be able to do things.

The thing is, I know Im not the worst case out there, there are people who are worse than I am and every day is a blessing because it's another day I'm still here and still fighting to survive. If someone said to me "take this and you will never have your problem again" I would with no hesitations. I'd love to be able to do things I loved and go back to work (I miss working as it really did feel lovely to open the bank account, see a wage and think "I earned that" rather than having to rely on the state) and not spend days just flopped about waiting to get well. That day may come, it may not. Of course I would grab it with both hands if someone offered me that chance but for now, my "job" is staying alive.

Jace has been helping me do that, from medications to making sure that if I'm tired, I rest a little. I know it's been challenging for him on days where even though I need to stay in bed, I've just wanted to flit about and do things, main things we did recently was having a complete clear out. Just getting rid of the things I don't need or use, giving away things that can be used again and throwing away the junk because I do have a hoarding instinct at times (typical part of OCD) and it's a challenge to keep that in check. I had to ask myself why I couldn't let go of things, there wasn't much reason for it in most cases and it had just been there at the time. Usually I hoard books, DVDs, drawing stuff and little trinkets, I'm cutting back on it now because this isn't just my space anymore, it's Jace's too. It's not fair for me to make him live amongst my rubbish. We are getting there and it's been a rewarding process from adapting to living with someone in an intimate way and it's one I intend to keep working on.

Move forward, don't stagnate.

Loves
Wendy xx

Sunday, 18 September 2016

Things are Changing!

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

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

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

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

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

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

Loves
Wendy xx

Wednesday, 31 August 2016

A New Chapter

It's been nearly 2 weeks now since Jace moved in with me here. Its been the best 2 weeks that I have had in a long while and even though I have been quite poorly during this time, I have been contented. I think that having Jace around has helped improve my confidence to no end and I have found myself doing (and wanting to do) more than before where all I felt like I was in a cycle of eat, sleep, clean, watch TV, sleep etc. We've both been happier for the new situation and I know that this was the right step to take. We'd been planning how to do this for a while so to have finally gone and done it was like a dream coming true for us.

I know it has been a huge step for Jace and I appreciate that every day. He's chosen to live away from everything he knew back in Blackpool and I have been doing my best to make sure that he is able to find himself friends and people who he can talk to, people who share interests with us both. I won't go in to too much detail though as it isn't really my place to speculate. All I know is that he is here now and we are happier than we have been in some time, as long distance in relationships is a tough factor. We have been together for over 4 years and we had times that were harder than others (again I don't think I need to go in to too much detail here as its a private thing) and there were times when we felt helpless to stop the things going wrong.

The main thing though is that we were able to overcome those things and as a team we made a wonderful life together and this is where we are today. We live in our own little place out of the way and we are happy. Very happy. And this will only continue to get better as time goes on.

In terms of my health, things haven't been quite as rosy as this but I guess that is what you expect from a brittle asthmatic who can go from being fine one moment to not being so fine the next. This infection I have been battling for nearly 2 years (pseudomonas is a nightmare because it colonises and then you end up fighting against something that in my doctor's words "never really goes away completely, just gets weaker for a while") or maybe even longer, I don't know. I actually don't remember when it started, its been that long. Its one of those things though isn't it? But the most important thing is that I'm not doing this by myself anymore (my friends have been awesome but they can't keep watch over me for 24 hours a day) and I have someone to help me, to love me and to support me when I need it most. And Jace also has someone to make him feel the same way.

We have a simple life here. But its fun, we have plenty of things to share and things are only going to get better.

Loves
Wendy xx

Sunday, 24 July 2016

Paying it Forward.

Getting over asthma attacks is one of the most exhaustive processes I know. It is hard work and it leaves you feeling like everything is a million times harder than it ought to be. I spent a lot of the first few days at home sleeping because I just felt so tired but finally calm because I was back home, in my own environment where I belong. The one thing I really didn't realise how much I appreciated until I couldn't get that was the quiet. In hospital unfortunately there are a lot of people who are demanding, especially on medical wards where patients are generally dumped while waiting for care home placements (totally wrong, but when the families don't want to take them home, where else can they go?) because they are too demanding for families, it is awful to watch, even more so when you watch a lady on the ward who as soon as she was told she was able to go, started throwing herself on the floor and refusing food or drink.

I felt for her, she just kept saying that she couldn't go home, not while she could get the care she needed there despite the doctors explaining multiple times that actually being in hospital exposes you to bugs and infections and the home is the safest place. A lot of the time, all they want is someone to sit with them or just treat them like a person. I always try to be kind and polite to people, especially when there's 6 of you and you are in a room together for an undetermined amount of time. Even if it is just by sitting with an old lady in a chair while she babbles unable to fall asleep and holding her hand or striking up a conversation with people, which usually means that most times I leave the place with new friends. I believe that being friendly and kind to others is a valuable thing, even if some people take it for granted. I don't do it for any other reason than I feel its the best way to be. Its like my own way of "paying it forward".

I came across the film "Pay it Forward" a few weeks ago and it struck me as a really interesting film with such a great message, even though the story didn't have a happy ending. It follows the story of a kid called Trevor who upon being set a social studies assignment did something incredible after meeting with a new teacher whose own misfortunes in life helped them relate to each other. Trevor lives with his alcoholic mother who works as a stripper and in a Vegas casino, she wants to make things better for the two of them but really struggles due to her own issues. Basically the assignment was to think of an idea of how to make the world a better place and set it in motion. Whilst riding home, he meets a junkie called Jerry and takes him home for a good meal and a safe place to stay, but instead of asking his new friend to pay him back, he comes up with the idea of "Pay it forward." in which after someone has done something selfless to help you, you go forward and help 3 other people in a similar way. They then go and help another 3 people and it grows in size.

Admittedly it does kind of depend on human conscience and whether people can actually do selfless things (sounds silly but there are a LOT of people out there who call themselves "social justice warriors" and just repost memes on Facebook instead of actually getting up and doing something to change the issues they "care" about) but the idea was something that I really liked.

I may not be able to fix a car or give a homeless guy a meal and safe place to sleep, but I try and offer my friends and neighbours anything they need, whether its a cup of sugar or to borrow my strimmer. I do cross stitch pictures for people and make and send cards because I want to. I want to spread beauty and kindness. I show people who ask me how to cross stitch as I feel that as a therapy it has really brought something calming in to my life, which when things were going wrong, I clung to. I don't have a lot of the material stuff but the one thing I have in spades is kindness and patience towards other people (some less than deserving of course, but hindsight is a wonderful thing and all that) . Some people test that more than others but you get that regardless of where you go and there are always people out there who are only in it for their own reasons, that's OK, because when you find out who those people are, you don't owe them anything.

In fact, in life, you don't owe anyone anything. No one truly owes you anything. The world doesn't expect of you and you shouldn't expect too much of yourself. As long as you are doing something you know isn't harming other people or is making your world a neater place to live in then fine. Personally, I like to spread the word with art and crafts. I feel that it gives a lot of positivity and can make you feel better, maybe not in a way you want but it gives you something to work forward on.

I guess the message I want to take away from all of this is to keep yourselves smiling and if you can help someone else. DO.

Loves
Wendy xx

Tuesday, 12 July 2016

Admitted

On Admission, A&E
Pre-Admission 
 So, yeah. Last week this kind of happened. Basically you know the story, feel rough for a couple of days barely able to stay awake and wheezing like there's no tomorrow. Hourly nebs and generally spending most of the time either fast asleep or so out of it that you barely know whether left is right or up is down and you become like a zombie. Except you are still trying your best to keep going and ignore that grizzling pain or the fact that it's taken you 10 minutes to get the breath back to get up off the toilet. Maybe it's because I spend generally most of my time feeling like crap and having trouble with breathing that I almost don't notice the slow decline until it hits me with a bump. I was working so hard to breathe that I was exhausting myself quicker than usual and by the time I did finally call for help, it was very VERY clear that I had been struggling on for a few days more than I probably should. My reasoning was that since I had seen the GP the previous week and they hadn't seemed all that worried, then perhaps this was one of those things. Take the antibiotics and rest and hopefully things get better.

I knew when I called and Di helped me get the crew to the bungalow that I had made the right choice. It was clear that this was a bad one and that this would need to be treated in hospital. I had a lot of worries going in but Di managed to sort those for me, to which I am so grateful to her for. She also managed to contact my mum and let her know as once I was at the hospital, my signal was awful. But that is common for all mobile phones in hospitals. I fell asleep after a while I think and when I woke again they were telling me my mum had called the department and asked what I wanted them to tell her. I said to them to just be honest. She knows what's what, she works in a hospital so has seen it (OK so she isn't clinical staff but she has seen and been in the same room as some pretty scary stuff). I think I then went back to sleep for a little while once the IV magnesium, 2nd lot of hydrocortisone and other meds kicked in. I was so tired that once I was on the ward and had had my night medications, I was fast asleep until around about breakfast time when they were poking me to get some obs. After breakfast I did go back to sleep for a bit and probably spent most of Thursday resting.

Asthma attacks are hard work. They are painful. They are generally awful in many ways and you can't always predict when they happen or what severity they will have. Some people can have a little bit of a wheeze, puff on the inhaler and be fine. Some people have to spend hours with a nebuliser and oxygen just to get to a better position. It isn't a "one size fits all" kind of condition and theres so many variations between the types of asthma, causes and what it does to the people with it. My symptoms usually start and then get worse over time. Before we know where we are with it, I am breathless and wheezing and sometimes we just can't fix that at home, no matter how much we tried. 

Maybe I was just wanting to keep myself going for as long as I could without having to rely on admissions and A&E visits in a time where resources are stretched to the limit. I didn't want to worry people close to me as I know that they have enough going on and don't need a medical emergency out of the blue like that. Whatever my reasoning was at the time, it hardly seems that relevant now. What has happened has happened and to be honest it was kind of unavoidable because no matter what I try and tell myself, I have a condition which has not been managed in a stable way (although the home oxygen was proven that it has clinical need which is what they were contesting originally, even the consultant in charge of the home o2 programme even said that it had more than proved it's clinical need) for some years now and it gets to the point where you almost question everything you do and whether or not it was right. The other nurse who came to see me (the one who said that only nurses understand oxygen.. don't ask...) was treading a dangerous line with recommending removal of my nebs at one stage as (again by the head honchos) it was said that removing them from my life now would be like playing a game of Jenga. You can't hack at something randomly and not expect it to be a problem.

I've been home for a few days now and am gradually readjusting to stuff. OK so I have been asleep a lot over the last few days but again, its my body trying so hard to heal and recover from the worst of it. They say it can take a week to recover from asthma, that's all well and good when you can get rid of the symptoms for more than a little while!

Loves
Wendy xx

Tuesday, 5 July 2016

ARGGGHH!!!!!!!

I've been having a few rough days recently. I won't go in to too much detail as it wouldn't be appropriate and I have always tried to keep my private life as what it ought to be. Private. On another 2 week slog of antibiotics again, well halfway through but not really feeling much better. It's OK these things take a while and it was left for a month to get ingrained and deep set (because getting an appointment for the same month is like getting hen's teeth) and my bloods had indicated that there was active infection but no one took action on it, probably because like all surgeries, my doctors are overworked and under more and more pressure. The result is that sometimes, no matter how hard you try, someone will always slip through the net and unfortunately that has been me. Again. I'm annoyed but to be honest, I expected no less.

It is rather frustrating that this infection has come and gone at a constant for over 2 years and it just seems to get just under the borderlines so that treatment stops but give me a week and its like it all starts again like a vicious circle which adds more and more to the thickening and stiffening of my airways. To be honest, it makes me angry because I really just want to be better. I want to be able to breathe easy or not have to worry about the pain of my back and legs anymore. Unfortunately my health issues are mainly hereditary and that is something I really have to get to grips with as they are a part of my genes. They are a permanent thing now.

I guess it's important to keep on top of them and manage as best we can even in circumstances where it is difficult. I'm not going to lie. I do feel restricted and I do hate that I struggle with things day to day but I try as much as I can. I do try and be independent. I do try and make sure I am looking after myself and the animals as best to my ability, they are the world to me. They are like my family and they make me feel so much better about everything, even on days when I feel like I am on a low ebb. They remind me daily that I am the most important human in the world to them. During one of my more dark moods recently (I won't go in to it fully but I was feeling so down I couldn't even see straight, it happens), it was them squeaking and cuddling up to me that reminded me that I wasn't going to go anywhere. Maybe its because they know when I feel stressed or upset they know that then is the time to make me feel loved and it helps me take a huge step back from the edge, which is something you never realise just how close you are until someone or something pulls you back.

I live with bi-polar disorder, OCD, slight Aspergers as well as borderline personality (schizophrenia) and I don't see those as reasons to be ashamed of myself. Actually, having issues myself has allowed me massive amounts of empathy and I have learned to look at things from as many points of view as possible. Sometimes things can seem better if you take the time to look around. I have had to understand a lot of my thought processes and reassess myself as a person. Things have changed from where they were 6 years ago and while so much has gotten better there is the undeniable fact that there are things that aren't so good. Its not something that is anyone's fault or anything like that, its just as it is.

For now though I am going to continue to keep up the good fight against this infection, do I think I will get very far? Maybe not but at least I am still trying to make the best of it.

Loves
Wendy xx

Monday, 13 June 2016

Why?

Maybe it's because I was brought up around animals and taught to respect every creature from a young age but something recently has really stirred me up. Its made me angry and sad at the same time because I know what a pet should be to a family. Animal cruelty is on the rise in the UK and it makes me question my faith in humanity. From when I found out about Baby the bulldog, I knew I wanted to help spread the word as much as I could, and even if it was only 1 or 2 signatures I managed to inspire, then it was successful. I also openly support Operation Frankish in their endevour to make sure that these people are taken to task about what they did.

Today, I found out about another dog who died due to the cruelty of their owners and the complacent nature of the RSPCA who aren't doing anything to make sure that this person doesn't harm an animal again. Hamish spent his 14 months of life being tortured and abused before succumbing to his his injuries and sadly passing away. I just can't understand it. I really can't. How can people think it right to beat, abuse or torture their pets? When my ex-neighbour poisoned my guinea pig Bumble, we did what we could to make sure that he didn't get away with it (nor the 12 months of hell he put me through as well). The problem is, animal abuse doesn't carry any serious consequences.

If you were to do some of the things that I have heard of and seen done to animals to a child you would have the book thrown at you. Why should that be any different to a dog or a cat, or any animal for that matter. It seems to have gotten worse recently and theres been many stories around about animals that have been brutalised, tortured and even mutilated by sick individuals who only get a slap on the wrist, told they can't have a pet (although 9 times out of 10 they do anyway) and then let on their merry way to go and find another helpless victim. Suspended sentences are a joke.

The Frankish brothers got paltry suspended sentences and when the public spoke up about it THEY were the ones that were given protection! Who protected Baby? Who stood up and said "That's not right." and helped that poor dog? At the time, no one. We seriously need to rethink how we deal with this issue and make sure that there are proper deterrents out there and proper consequences. These people need to be punished and know that what they did was wrong and (if its even possible) rehabilitated in to decent people who won't attack an animal because they saw it as beneath them.

Loves
Wendy xx

Labels

ABG (2) acceptance (5) Adventures (1) Alphonse (2) Ambulances (5) Amusement (1) Angry (3) Animals (2) Another Day In Midgar (2) Appointment (1) Art (4) Asthma (22) Asthma Attack (12) Asthma UK (2) Awareness (2) Bad Attitudes (1) Bass (1) Benefits (3) Birthdays (3) Blogs (2) Blood Pressure (1) Books (1) Bucket List (1) Busy Day (2) Calming (1) Catherine (2) Childhood (2) Chocobo (1) Christmas (4) Cleaning (2) Close Calls (1) cold (1) Comforter (1) Compensation (2) Creativity (1) Cruelty (1) Custody (1) Cute (1) death (3) Debt (2) Depression (4) Design (1) diary (1) Disability (1) Disgust (1) Disney (1) Distraction (2) Doctors (4) documentary (1) Dr Pike (1) Dreams (1) Drugs (1) DWP (1) Dye (1) Eating Patterns (1) ESA (1) Exhaustion (3) fair share (1) family (1) Films (1) Final Fantasy 7 (5) Flu (2) Fluid (1) Food (1) Friends (7) Gaming (2) Gizmo (2) glass half full (3) goodbye (1) GP (5) guidelines (1) Guiniea Pigs (6) Guitar (1) Hair (1) happiness (6) haters (1) Help (1) HND (2) home (3) home use (1) Honesty (3) Hope (4) Hospitals (8) Housework (1) Human Nature (1) Illness (5) Infection (5) inspiration (1) Instincts (1) Joke (1) JP (2) Judy (1) Labas (1) Life (2) lost cause (1) love (1) Luke (1) Lungs (3) Lush (1) Me (2) Medication (7) Memories (1) Mike (1) Mind (1) MSN (1) Music (6) My Past (1) Nathaniel (1) Nebuliser (8) Needles (1) neglect (2) Neighbor (2) new look (2) New year (1) NHS (2) Noise (5) Omen Shadow (2) One day's supply (1) Organ Donation (1) Pain (3) Patch (1) PDSA (1) Poem (1) Positivity (1) Pred (3) quotes (1) Rachael Wakefield (1) Rachy (1) Random ideas (1) Rant (1) Recovery (7) reinvention (2) Reporting (1) Routines (1) sad (1) salmonella (1) scared (1) Sean (1) Selfishness (1) Sephiroth (4) Sephy (3) Simon's Cat (1) Sims 2 (1) Sleep (6) Sorting it Out (1) Spite (1) Steve (1) Store Room (1) success (1) Support (2) Survival (4) Tattoos (1) tears (1) Technology (1) Temparature (1) Thank You (4) The Crow (1) Therapy (1) Thoughts (1) Thrash (1) Tired (1) Toys (1) Transformers (1) Transplant (1) Veins (1) Vomiting (1) warnings (1) West Midlands Ambulance Service (2) winter (1) work (1) Year (1)